They were wrong - misdiagnosed...
Vložit
- čas přidán 28. 08. 2024
- Recently, I LOST a diagnosis. While in theory, that is great news, the emotions attached are complicated...
#diagnosis #misdiagnosed #amputee
----------------------------------------------------
WANT TO SUPPORT THIS CHANNEL? //
PATREON: / jobeckwith
Thank you SO much for considering supporting my channel! You can check out our Patreon community above!
If you’d like to chip in as a one-time donation, I truly appreciate that more than you know, and you can find the ability here: paypal.me/footl...
CAMEO (have me send you or a loved one a personal video message!) www.cameo.com/...!
MERCH!
teespring.com/...
SPEAKING
Want me to come and speak at your event, conference, meeting, panel, or school? Fill out this form to submit a request!
www.footlessjo...
THANK YOU so much!
----------------------------------------------------
CONNECT WITH ME //
Instagram: / footlessjo
Twitter: / footlessjo
Facebook: / footlessjo
Tik Tok: @FootlessJo
My Website: www.footlessjo.com
My 2nd Channel, @Trauma Talk : / jo2am
----------------------------------------------------
CONTACT ME //
MY P.O. BOX:
Jo Beckwith
3578 Hartsel Drive #615
Colorado Springs, CO 80920
E-MAIL ME:
www.footlessjo....
----------------------------------------------------
MY STORY //
Fourteen years of pain and failed ankle surgeries brought me to 2018, when I made the difficult decision to become a twenty-seven-year-old below-the-knee elective amputee. This channel is to document my journey of amputation surgery, recovery, and reclaiming my life.
MY PROSTHETIC LEG:
I use the Ossur ProFlex XC Torsion foot/ankle with a direct socket with passive vaccum suction.
MY AMPUTATION STORY - IN VIDEO:
Why Did I Lose My Leg? • HOW I BECAME AN AMPUTE...
How I Said Goodbye To My Leg: • COME WITH ME ON A GOOD...
Seeing My Amputated Leg for the First Time: • Seeing my amputated le...
Day in the Life of an Amputee: • A Day in the Life of a...
----------------------------------------------------
MY EQUIPMENT //
Camera - Canon EOS M6 (Video Creator Kit): amzn.to/2OVcjim
Camera Mic - Rode VideoMic: amzn.to/33FPanU
Sitting Mic - Blue Yeti Mic: amzn.to/33GJOsW
Gorilla Pod: amzn.to/32oGWjU
Ring Light: amzn.to/2nTRBEr
CONTRIBUTE SUBTITLES! //
Want to help my videos become more accessible to viewers around the world? Use this link to contribute subtitles and translations!
www.youtube.com...
MY MUSIC & CREDITS //
The music contained in this video can be found at Artist.io - artlist.io/Jor...
The End Credit music is “Summer Snow” by Low Light/Nick Kingswell
Thank you so much for listening - you make a real difference in my life, you enable me to be able to do what I love, and I am beyond grateful!
Some of the links above may contain affiliate marketing
![Finally Telling the REAL Story: The Lawsuit Over My Amputation [CC]](http://i.ytimg.com/vi/xNTBF2JTx7U/mqdefault.jpg)
"I am smart, I just don't know how to say that word"
WE
LIVE
FOR
THAT
ATTITUDE
!!!
preach
Oh my gosh, yes.
I think we don't talk enough about how exhausting it is to have undiagnosed chronic symptoms, and the rollercoaster it is finding help and/or a diagnosis. I feel you on this.
Since last November I'm in that rollercoaster and it is really heavy and insane. Couldn't have imagen it like that before I hopped onto this attraction (not by choice of course)
jocelynlt I’m going through this now. And problem is there are multiple organs and systems involved and thus multiple doctors. I’m having a test Monday which will definitively say whether I have one condition.
@@Ladypuppy510 Good luck this Monday. I hope it is something they can cure, but an answer might be already nice.
I spent 20 years being ill and not knowing why, constantly looking for the reason but having to tell myself that not knowing what it was didn’t make my illness or my experiences any less valid. But I do have to admit that finally, FINALLY getting that diagnosis is honestly a game-changer. I still believe that people without a Dx are valid, but I can’t deny that having one does change things.
I was getting my nails done several months back and I happened to mention that I had a chronic illness, and the tech got really quiet and then said, “Do you mind if I ask what?” And just by the way she said it, I could tell that she was on the same journey I’d been on. There’s a certain attitude and tone of voice that comes over a person, and you’re absolutely right that the cause of that is exhaustion.
@@Ladypuppy510 good luck on Monday, I hope you can get some answers soon ❤
I really appreciate how you show moments where you say “I’m not smart” and then you say “no I am smart I just have difficulty pronouncing this word” and then later when you said “it’s weird that I feel that way” and then said “no, it’s not weird, it is normal” because I feel like I beat myself up all the time and forget to remember I’m not dumb I’m not broken I’m just a human and this is my experience.
💜💜💜
Oh geez I agree with this. It's great to have that normality of someone saying their initial thought, then adjusting it.
Oh my goodness. I'm so grateful yo I posted this!!! I think I do the same but I've never sat and thought of it this way. Seeing it written down is a light bulb moment for me 💡 I also love that Jo shows this too! I think it helps to reinforce it in my head to hear someone else do the same ❤
Completely understand how important it is to have an answer to why you’re sick. My grandpa who adopted me was very sick and got progressively worse for a whole year before he finally got a diagnosis of terminal brain cancer. While the diagnosis was devastating, we both felt so much comfort just knowing what was going on, why he was so sick, even though it wasn’t a good answer, at least we knew.
I'm sure you know this, but I'm going to say it anyway: none of this is your fault, and you are entitled to the emotions you're going through.
My favorite Maya Angelou quote is "Do the best you can until you know better. When you know better, do better." You were going on what the experts were telling you. That doesn't invalidate your experience, or the videos you made.
Chiari warrior here...SO glad you didn’t get surgery!! I have EDS, DDD, IIH, and MANY other comorbidities!❤️
I traveled out of state to have an upright MRI in order to try to get a Dx of Chiari malformation - when it came back that I didn’t have it I was honestly quite upset, because the symptoms had seemed to fit so much, and I was at a loss as to what could be the explanation instead. I mean I am grateful I don’t have to have brain surgery but it’s so tough to think you have answers and then have it ripped away. I really identify with what you’re going through here.
Every Dx I’ve ever gotten (for something chronic, not acute) has been a HUGE relief. When I figured out I have EDS I was ECSTATIC for a few days. Finally! After two decades of being sick! I know THIS is the thing!! I was obsessing over it like a high school crush. Eventually I figured out how hard it can be even to find doctors who can treat you and the thrill wore off, but my life is SO much better now that I know. I think wanting to get a Dx and being relieved when you do is a very normal thing with chronic illness.
It can be very scary to have something wrong and not know what it is. Your feelings of confusion and frustration all make so much sense. Thank you for sharing this update with us!
I’ve been dealing with incredible migraines for years now and was convinced it was from childhood back injuries. No one could explain why they were so severe, but alas was doing chiropractic and physical therapy to fix my back. Meanwhile, my periods (while always historically bad for me) had been getting completely out of hand with pain. I had always been told cramps suck so blew it off. But when my family actually SAW me they knew it wasn’t normal.
Long story short- I took it upon myself to document every time I had a migraine. Turns out they are before, during, and after my period; plus before and after I ovulate.
I took the initiative to see a specialist and I have endometriosis! I haven’t needed all this physical work because my migraines are frikin hormonal and caused by rapid increase/decreases of estrogen in my body.
If only I figured that out 10 years ago, I could have saved so much money and frustration.
I'm proud of you for advocating for yourself and figured it out in the end. I can't imagine how difficult endometriosis is ❤
I can so relate to the feeling of wanting/needing a diagnosis. Years of my life were spent on that search.
Same I just need and want that diagnosis that I have been living with for so long.....
So relatable for me as well.
I've always felt like a diagnosis, good or bad, is the start of getting answers and help. It's also (even though it shouldn't be) a way to make your problem believable/understandable to others, a "reason" for X to happen. Losing that answer/reason/justification can be devastating, not just on a personal level but because you start to question if other's are doubting your medical problems.
This. This right here! ☝🏽
You know what - I spent 3 years chasing a diagnosis. And every time I’d get a bunch of tests and they would come back normal, I had the same reaction you’ve had. I was supposed to be happy about not have this grievous disease, but I mourned the potential diagnosis and the moving from not knowing to knowing. Its a real thing. A real reaction. don’t beat yourself up about that at all. And yes - tho - it is Great News that you didn’t have unnecessary brain surgery! Take care!
That feeling of having tests come back normal and wishing they weren't is one I've found normal people just can't understand. I don't wish I had the thing, I wish I had the answer and I was hoping this would tell me it so I can move on to figuring out what to do to help.
I completely understand what you are talking about so much. I had a similar experience a few years ago. I had neck pain for years, in 2015 I had scans, and nerve studies done. At the time they didn't show anything substantial. Fast forward 2 years later I just suddenly had severe burning nerve pain down my right arm that I just couldn't get to let up. So back to having another MRI, another nerve study, and this time it did show something. I had severe radiculopathy down my right arm, spinal stenosis, and two herniated discs in the same part of my neck. At this point the discs were also starting to encroach on my spinal cord. So at this point there were not none surgical options and I ended up having a c5-7 cervical spinal fusion a few weeks later in 2018.
For the first 3 months after surgery everything was improved, I had no nerve pain, no balance problems, no motor function problems, I wasn't dropping things, the numbness in my arms had improved, and even on a weight restriction my weakness had improved. However, after 3 months everything started coming back some things worse after surgery than before like weakness, also I had issues with both arms instead of just the one. They thought maybe it was a loose screw, hardware failure, failed union, one of those things. Nope everything had healed fine and there wasn't any hardware issues. The repeat nerve study said things weren't showing as severe this time so they had "improved", it was on both sides now, but it was probably just presurgery damage. No one could explain why there was 3 months of miraculous improvement only for things to return, and no one can really explain why I have the issues I have now.
So when they get frustrated with my case they will either try to send to me to someone else or go oh well that must have been previous nerve damage 'hiding'. So at least before I had an explanation for what was going on, now I have the same problems but with no answer, and no way to get better. Sadly, isn't the only time similar things have happened in my life, and while it should be super great that you don't have something, it doesn't explain what you do have. One thing I have struggled with in my many years with chronic illness is invalidation. Invalidation is one of the hardest things for me to deal with.
It legit can make a person feel crazy to not have answers :(
I really relate. Every doctor appointment I went to and came back with “nothings wrong!” I just thought I was crazy and weak. I was at mayo and they wouldn’t diagnose me with pots and Eds, even tho I asked them straight up about it. I finally went to a new doctor who has diagnosed me with Eds and pots and has actually started treating me and it’s so freeing to just know there’s a reason
I really appreciated this video. I was diagnosed with a degenerative eye condition as an infant. I lived with this diagnosis and it very much became a part of my narrative. I had an explanation for the vision loss that I was experiencing. Late last year, I went for genetic testing. They found one mutation on a gene that didn’t make sense for my condition and overall the results were really strange. The genetic counselor and consulting specialists think I have a cortical visual impairment. It’s very much a catch all diagnosis and doesn’t explain my progressive vision loss. I felt like a huge piece of me was ripped away from me. I went through this weird phase of almost mourning. They’re redoing my test, but I suspecting things have been delayed with COVID. It’s nice to have answers and explanations to why our bodies function the way that they do. Even though those explanations may suck, it at least provides some comfort.
Hugs ❤
As someone who has severe migraines with no known cause, I can understand being upset when you thought there was an answer but then there wasn’t. Love you, especially your honesty❤️
I'm so sorry to hear that. I am 29 and I went 22 years whit a undiagnosed multiple sclerosis that left me whit so much scars on my brain. When I received my diagnosis I was so happy and no one understand why I was sooooo enthusiast! I feel I was at the end of a battle and the begging of another, way easier (and I was right). I really understand you. I can't post cat pictures here to help but I know you have some furry pets, so I would advise to go hug one!!
Ive just posted somerhing similare. At 36 i was Diagnosed with MS and was happyish because i finally had a reason for what was going on. Then had another Lumbar Puncture and they told me i dont about a year later. I now have no reason as to why im having these problems
❤❤❤
@@heidibaltom8138 hmmm how did they diagnose it initially? I have some MS symptoms, but don't have others.
i have primary Raynaud's syndrome in my feet (severe swelling, neurological pain and itching brought on by poor circulation and coldness) and it took like, five years to get a diagnosis and it was exhausting. Having a diagnosis is a relief, because it took so long to get an answer and have it treated properly. My Raynaud's is still disruptive to my life, but the fact that I know what it is, is very empowering even if it can't be "fixed". Being in the dark is no fun, and for something as serious as a chiari malformation would be awful to have an answer like that taken away from you. I'm SO GLAD you're doing well enough to compensate and you're off the meds you wanted to get off of. Diagnoses do become part of your identity - and getting one taken away is a... process, so I understand your complex emotions. I hope you are able to get answers eventually! You are not weird. It is human. You are human.
You verbalized all the things I try to say but can’t find words for. Wonderfully cathartic to listen to you talk about this. You hit the nail on the head when you said “it’s not weird that I feel this way, it’s human nature to want to understand what’s going on”. Yeah. 100 times over amen.
Wow, that’s a wild ride! Your complicated feelings about ‘losing’ a diagnosis are completely understandable.
It’s so hard when our bodies are going through chronic but somewhat vague symptoms. Head, neck and back pain can be a sign of so many different things and doctors will always go for horses rather than zebras.
Honestly, I think your slight disdain for the medical world is not misplaced. There is still such a strong thread of paternalism and it affects women with chronic pain more than most.
It took me 25 years to get any sort of diagnosis, having lived with chronic pain since aged 7. And my diagnosis has already changed again!
As it happens, I went through a period of a few years with very frequent migraines, myself. It’s only been since I went on Pregabalin, which was prescribed for something else entirely, that I’ve gotten relief. I now get maybe two a year!
I hope very much that you can find some relief from your migraines xx
Everything you said makes perfect sense; a diagnosis is a really important puzzle peice in the understanding of one's story and experiences... When it's taken away you have to essentially retcon your whole life.
I also agree that diagnoses are important even if they are not actionable. Knowledge is power. There is a condition that I'm 90% sure I have, but I've never sought an official diagnosis because like you, I already have more doctor's appointments than I'd like and I feel like dealing with medical stuff that isn't purely necessary is too much. Plus, there aren't really treatment options available, so the only point would just be to know, one way or the other. If diagnosis were only important for treatment, I'd have long forgotten about it. But instead it sticks in the back of my mind and I will likely get testing eventually because I just want to know for sure.
As a side note, over time I hear more and more stories about false negatives on covid tests, and I always think of you. I would not be at all surprised if you eventually get an antibody test and it turns out you had it.
I have Chiari Malformation and I got the decompressive craniotomy when I was 19 years old in 2018. I got Chemical Meningitis and sepsis after the surgery and almost passed away in intensive care. Im glad you don't have to go through what I did.
That sounds so so so terrible. I’m sorry ,but so happy because you’re still with us ❤️
I'm glad you made it through despite the horrible issues you went through 💜
Thank you both 😊🥰
I have chiari malformation. Had my surgery in 2013 at 57. They also found a cluster of blood vessels all tangled. I still have terrible pain and see pain management every 3 months.
@@chronicallypained7523 I'm so sorry. But you are so strong and I feel for you! ❤
Thank you so much for making this video! I understand the feeling of disappointment when a test comes back normal, which sounds crazy but I get it. Having answers taken away from you can feel SO shitty. very proud of you for speaking about this publicly!!!
Please please please do not feel bad about having to update that you were misdiagnosed. Misdiagnosis is unfortunately part of the process with chronic illness. Especially with multiple overlapping conditions. And I totally get the feeling of loss when a diagnosis is taken away and a solution isn't given.
Doctors make mistakes all the time! I can't even begin to list the number of times I corrected a doctor, even as a teenage girl! It's pitiful!
I went to the Dr once and it was a PA and he asked me what I thought I had and what I wanted prescribed. Great, I could have just gone on Google myself 😐
Edit to add: he literally just wrote the prescription for what I told him.
Girl, that is traumatic in itself! I know that when I was diagnosed it was such a relief. Having answers like that is the only thing better than no answers. But Im really glad you don’t have to take on decompression as of now. 💕
It is SO SO hard to exist just....NOT KNOWING. I find my diagnoses comforting because, as you said, there is a pattern, a reason, a recognized set of symptoms and causes. I was SO relieved, with EACH diagnosis, to be able to say, "SEE? I *wasn't* just overreacting!" (The irony being that my conditions were *worsened*, of course, by the gaslighting and dismissiveness of being told to suck it up and shut up and get over it since I was "obviously overreacting.")
So...thank you for echoing my experience with the difference between diagnosis and not having a clear diagnosis. Having a shorthand, a NAME to put to things? It makes it easier to explain to others so that they can have sympathy rather than impatience or disdain. I value many of your videos because they are authentic and, for me, relatable.
Oh baby im so sorry for dealing with it. It took me 7 years of pain in truma to get a deignosis of fibromyalgia from c-ptsd. (And im only 17) . Its suck soo much . I love you and your videos soo much✨❤️
From her newest video, that seems to be exactly it.
Did they ever do a spinal tap to look at your intercranial pressure? I was recently diagnosed with IIH with very similar symptoms and it took 5 hospital visits to diagnosis it.
I’m not sure how Chiari malformation can be misdiagnosed (I have a CM). But I did have one of the same thoughts as you. Background: my CM is connected to a birth defect that I have called spina bifida. I’ve had CM since birth with no symptoms. Until 4 years ago. Then my symptoms started and got really bad. But then I was told that my CM is inoperable. (There are different types; the type I have is more complicated than the one likely discussed in this video). So they said they could replace my shunt (tube to drain excess spinal fluid) and see if that helps. I wasn’t convinced that that would help. I really didn’t want to go through a surgery that wasn’t going to be effective. But I decided to trust God and the doctors (two doctors agreed that it could potentially help). So I had the surgery, and it helped. So my situation obviously turned out well, and yours left you with more frustration than before. And I’m sorry for that.
YES YES YES. I went through so long trying to get a diagnosis, for EDS and RA, both. It was kind of odd, as I was testing positive for immune system issues, but not RA. It wasn't until the damage began to show up, very clearly, that the doctor was "Um, well that's CLEAR". Sometimes, the doctor said you treat the symptoms, and see if the person gets better. But it was INSANE as when I was told "Oh you have these TWO BIG IMMUNE DISEASES, and you'll be on a form of mild chemotherapy that could kill you at a pretty big percentage..." and I was "Oh thank goodness..." before the diagnosis's, I was "Lazy". Also very very good at yoga, and dislocating shoulder and snapping it back. But I get your "getting a diagnosis can be a good thing." It's validation. You have been TRYING for so long, crying, and a lot of people not believing you. It's not weird, it's when you are sick and in pain, you feel you should be able to just GET UP and do things, and depression takes over. A diagnosis, is important.
Fully understand this! As a teen it was ‘growing pains’, many RSI’s, stress. No-it’s rheumatoid arthritis and hypermobility, no it’s fibromyalgia, no you’ve had a mini stroke, no it’s MS or CFS, no it’s fibromyalgia or some weird form of arthritis again... 20 years and I haven’t a clue and just deal with the symptoms and live my life how I want because I’m too stubborn 😂.
I have been researching myself now and have theories, but no way of getting seen for ages yet to explore these and I had a breakdown to my GP on the phone last week and begged her to take my arm off... she obviously wouldn’t! But I’m at the end of my patience and I need a diagnosis so that my brain can come to terms with it. Then I could claim some benefits to help too, so I didn’t have to work so many hours and let my body rest.
All the best to you. I totally relate to everything you said. Thank you for taking us along on this crazy journey called life with you.
I hear you. I have had what I have come to call my "permanent migraine" for more than a decade and a half. It waxes and wanes in intensity, but it's always there. They have done imaging to rule out a brain tumor, etc. In the end they said they don't know. Duradrin helped until it was discontinued by all the manufacturers for being unprofitable (it was brought back under a new patent a couple of years ago, at a ridiculous new price). About 2 years ago a PA put me on Topiramate and while I still have an occasional bad day, it's down to a *very* manageable level. I know you want to be off your meds, and I commend that, but if it gets bad, you might want to ask about Topiramate. It seriously improved my quality of life. It can also help with other nerve pain, though it didn't for me, unfortunately.
That's horrible! I had a migraine for over 2 years, I finally realized it was related to eating gluten (I had to go more than a month without any at all before I saw a difference, but now idk how I ever could have not realized that was my personal poison)... I know that's not the answer for everyone and I still have struggles but I'm thankful I came across advice online about going GF or I would still be eating it (and I couldn't even eat a lot of days anyways haha)
I hope you're able to find whatever things make out easier and more manageable for you, and just remember that only you know your body! I hope things improve for you!
I can relate to this somewhat. I haven't ever been diagnosed with anything, because I've never gotten that far. (Self sabotage is my middle name, and to even get appointments takes forever). I've been struggling with pain for years now, as well as tics, and mental health issues (on the line of depression and anxiety). And looking for answers is such a big thing for me, because when I know what it is, I can finally tackle it and look into ways to at least feel better. I can say I have xyz, and not have to explain all the issues I have and why they cause me trouble, why I can't do xyz. People believe it more, if it has a name. So every time I walked out of the hospital after an MRI and that doctor just tells me it's probably noting, and there's nothing to be done, I just cry so much, because I don't want this to be my life. I don't want to be in pain and have 'nerve issues' for the rest of my life like this. I can't deal with the idea of it getting even worse, I'm only 20. I'm scared.
Having a name for what's causing trouble is soothing, because it makes it feel more graspable and deal-able for me.
Hugs. I'm sorry this is such a difficult thing for you. I wish the medical system was easier to navigate ❤
Wow that's a shock! I am glad you went and got more imaging done. Did you look at them yourself? Did you get the previous ones and compare the sagital midline image? I am the type that needs everything in view and explained and understood in regards to my own health and tests. I have learned so much since you mentioned chiari, starting my own journey to fiinally having a diagnosis. One of those things I have learned is that so many doctors do not fully understand chiari and so many doctors only go by the radiology report, which are rarely thorough and complete. The neurologist I saw a year ago, the MRI was done and then the report was done in like 10 minutes. The neurologist wouldn't look at the images himself, which is crazy to me. So, your misdiagnosis lead me to learn about chiari and educate and advocate for myself. Thank you for that. I now have a diagnosis, just had 3rd images done yesterday with a 4th set for next Friday and surgery just 13 days away (finally after so many delays and months of waiting due to the pandemic). There are only a handful of true chiari specialists in the US and thankfully one is in my state.
I didnt even have to watch, just by the name of the video I knew it was Chiari. I was diagnosed at 36, brain surgery at 36, diagnosed with spina bifida occulta and tethered cord 42. Any questions just ask, I am glad to help! You MAY still have Chiari and just not meet their criteria of how long the tonsils are.
As you said "you either have a chiari malformation or you don't ". If they actually said it hadn't progressed enough I expect they were blowing smoke to hide the mis diagnosis .
I totally understand where you’re coming from with this undiagnosis story. For me, it was a misdiagnosis. In 2015, I had some gastrointestinal issues that I sought out my doctor for, I went sent for bloodwork, and eventually a colonoscopy and gastroscopy to look for inflammatory bowel disease (of which there is Crohn’s disease and ulcerative colitis) and coeliac disease. That procedure ended up being negative for all diagnoses, and my specialist said “oh, it’s just IBS, try this diet and see if it helps”. I tried the diet for a while, symptoms worsened. Fast forward to start of 2019, I had stomach cramps, bleeding, all the signs pointing to an inflammatory bowel disease. I had another colonoscopy, and it was confirmed I have ulcerative colitis. I understand your relief for gaining a diagnosis, there’s a name for how I’m feeling. But in those 3.5 years where I was indistinctly unwell and didn’t know why, I get it. Thank you for sharing your story, we’re with you in this 😊
Hey Jo, just want you to know you are so right to every feeling you are experiencing. I too was misdiagnosed with Lupus when I was in my 20’s, and three years later they figured out I simply had a ruptured ovarian cyst along with endometriosis. This was in the early 80’s so not too many people even had heard of endometriosis. My point is that I know how hard it is to think you have an answer as the unknown is so much bigger to deal with. I am happy to hear that they did NOT take you in for surgery, but I remember your video party of shaving your head only to find out it was all for nothing the next day. You have had so much to deal with and you do so with honesty, grace and dignity. How could you NOT feel like the rug has been pulled out from under you? I know you will take good care of yourself and I am so very happy to hear you have found ways to deal with the pain without the meds. Kudos to you for that. I also know that you know that you will process this and be able to let it go when the time is right for you. I think being misdiagnosed feels almost like an assault. The only analogy I can think of is those who are traumatized verbally so no marks are left, so how can anyone know what your pain is really like, right? Yet those who are abused physically have the bruises to show for it. I say focus on your furry loved ones and your sweet hubby who takes such great care of you and just keep on with how well you are managing your life. Live your life by the time table that works for you. Those who do not have chronic illnesses simply have a hard time relating. I simply say to them, consider yourself lucky, though my illness is not able to be seen just know my pain is real and mine to deal with. I expect nothing from you other than your support and kindness if you are able to do so. It is such a great way to know who your true friends are. I know by your website you are truly blessed and loved by so many from all around the globe. I wish you the best as you deal with this new information. I am sending love ❤️ and light from sunny 🌞 Arizona 🌵🥵🌴, GastroGal
How did they confuse endometriosis with lupus? That's crazy. I'm sorry you went through that.
Lisa Andrews
Hi Lisa, at the time there were something like 9 symptoms and if you had at least 4 or 5 of them this doctor decided I had Lupus. I even explained that the symptoms did not happen all at the same time which is how I had thought it was usually diagnosed. She simply said just take the meds and you will feel much better in 6 weeks. Nope, even my pharmacist warned me that the meds she was putting me on could cause terrible side effects and he was oh so right. I gained 40 lbs. in one month, and by the time I was able to get a second opinion by a Rheumatologist who had been a doctor for 35 years he did more bloodwork and reassured me that I did NOT have Lupus, but I did have an autoimmune system that could show up some day as my bloodwork showed certain “titers” that mean there is an autoimmune system waiting in the wings, as he put it. Next he told me was sorry to inform me that the meds she put you has wiped out your immune system as she put you on medications that cancer patients take when on Chemotherapy. He asked if it was a young doctor right out of college and I said yes. So years later I was in car accident that caused me to get Type 1 Brittle Diabetes, and my life has never been the same 16 years later. Also, I had not had any surgeries for my abdominal pain which turned out to be caused by my Endometriosis (my surgeon at the time said the only way we can be sure it IS endometriosis is by doing a Laparoscopy so they can actually see it) which wreaked havoc until I got a great surgeon who was able to help me. After my 3rd surgery I had a sweet period of 15 years with no symptoms. But my Endometriosis and a ruptured cyst happened again and so the same surgeon did his magic and I was fine until my auto accident. But I had a great life for so many years and I was very active and so I am very grateful to still be alive even with a simpler life. I am living my life to the best of my ability and I just give thanks I no longer have the Endometriosis as my Diabetes (my Autoimmune condition which finally DID show up due to trauma to my pancreas) is my new condition in which I am learning to live with. So that is my story, and it HAS been a crazy ride. I thank you for your comment and your concern. So for anyone who is diagnosed with LUPUS please do get a second opinion. It was one of my doctors who told me to do so as he thought the first doctor had made a mistake. So take care and be your best advocate. EnJOY each day that you can and always keep seeking the right path to health for each of you who may be dealing with a chronic illness. Sending love and light to all from sunny 🌞 and hot 🥵 Arizona!!
I spent 7 years on the emotional rollercoaster trying to find out WTH is wrong with me. Tons of doctors, healthcare systems. Tons of tests, being scheduled for tests, then waiting for the test and the results. During that whole time, I'm of course googling and watching YT videos to understand and scare the shit out of myself! Dumb but we all do it anyway. Oh and also I'm 100% hoping this is the thing that is making my life miserable. Then the results come back and it's nuttin but crickets. Negative. I totally understand the madness of that letdown. When you're super miserable for years, trying to escape this hell anything will do! I would tell my doctors I wish my legs were gone, or I had cancer, or damn near ANYTHING (rhetorically of course.), just to be able to identify the invisible dragon tormenting me.
I eventually went to The Mayo Clinic in Scottsdale AZ. I spent 3 weeks there getting my whole me tested and poked and prodded. (You want me to do what??!!) Yeah, some of it was "different", and I was wiped out before I got there. But after that 3-week hell, they came back with, Myalgic Encephalomyelitis. Aka ME. But, there's no biomarker for it yet and we have ZERO ideas on how to treat it or cure it. That was 6 years ago. Oh, um, I'm still stuck, in a different flavor of hell. But it did get me my SSDI so that's a damn good thing because just doing a day at home is a rollercoaster of managing symptoms and do as little as possible so I make it through the day without energetically & mentally crashing.
Keep doing your videos! I'm twice your age but you are wise beyond your years! And it's always from the heart! Keep up the good work!
Totally valid feelings. Honestly, I've been so sick for so long and I KNOW there's something seriously wrong and just... Yeah, it sounds crazy but sometimes I have my favorite dream where a neurosurgeon will tell me, "oh, there's something seriously wrong, we need to take care of this!"... Like legit dream that sometimes while sleeping and it's a comforting dream, and surgery scares the crap out of me but so does tias all the time and yeah.
But it's totally valid, and thank you for sharing.
Might be worth looking into CCI and/or AAI, is instability of c1-c2 (top 2 vetebrea in neck), would be diagnosed by rotational CT or upright mri (one for side to side instability and one for up and down, so one might show something and the other might not)... It's not really a good diagnosis to have, either, but... Yeah, my thoughts are that it doesn't matter if it's a diagnosis that someone *wants*, what we all actually want is the diagnosis for what is wrong.
So idk if that's helpful or not, to you or anyone, but... Yeah, I can't keep waiting for doctors to figure out what's wrong, I realized I had to learn about things and start trying to solve the riddle myself while my brain still works well enough to figure out something sometimes haha...
So I hope things continue to be improving for you :)
Just thought I'd put that out there cause it seems like one of those diagnosis that doctors do not look for and eds peeps tend to have issues with it more than typical population and it makes sense since the top 2 vetebrea are supported mostly by connective tissue vs structurally with bone... I think it's kinda sorta linked to sometimes will cause Chari, idk the stats on that but yeah... So I kinda wonder (without really knowing) but maybe if there was instability, it could have looked like you had Chari on imageing one day and not on another? I have no idea, but... I'm annoyed (though not at all surprised) that doctors didn't investigate further... They must have seen something the first time and not the second time so I'd wonder about the positioning etc...
There are cases of Chari that don't show on typical mri while laying down but do show when upright mri, so idk if that's been considered as a factor... But yeah, I'm thinking about this and it's annoying, doctors should try to find out what is wrong and I'm sorry that's not how things work most the time.
I'm not sure where you live but I think maybe around Colorado, idk, but there's a doctor who I had an appointment to see (in PA) last may but it got canceled because he took personal leave and was on break from practicing medicine, but he just posted on Facebook today implying that he's returned and is at or will be at a Hospital in CA, I think in LA I'm not sure, his name is Dr Liu though, I've never actually met him but I've watched a bunch of his neurosurgery lectures on CZcams, cause I'm cool like that haha, but he seems to genuinely want to figure out what's wrong with his patients, and if someone else is feeling hopeless, I'd say look on CZcams, he's the least boring lecture in those topics that I've seen haha and I don't understand everything but you can usually understand the gist of what he's saying and see what might be relevant or not to you so you can be like me and keep having new theories for your neurologist to ignore hahaha
Anyways, thanks for sharing this, I really relate though I haven't had that experience.
But it's maddening when something is really wrong and the doctors just say nothing is wrong. I don't want anything to be wrong. There just IS something wrong. So just know that I believe you and your just as valid as you were before.
And thanks for sharing. I keep pushing myself to "normal" standards despite having severe problems and then I get really scary medical place and I know if I go to er they will say nothing is wrong and I will just feel worse and it just messes with me big time and I feel like everyone must think I'm just making things up even though no one has said that.
It was very brave of you to make this video. You rock :)
I left this reply on another comment but for all of those with chronic pain or undiagnosed symptoms I wanted to leave it here too: I have fibromyalgia and it all started bc they thought it was a herniated disk. If was years of thinking that and when I found out it wasn’t I was devastated. My treatment didn’t change until much later, but not having a definitive diagnosis was truly worse than the pain. I went through a full year of seeing specialists who referred me to other specialists only to be asked by a neurosurgeon if I had seen a psychiatrist. When I found out I have fibromyalgia I cried, not because I was upset about having a chronic pain condition, but from the relief of having a diagnosis. Stay strong! ❤️ I’ve had to explain so many times to so many people when chronic pain is and means. For the sake of your mental health you have to pick and choose who’s worth explaining and re-explaining to and who isn’t! Know you aren’t alone in it and be brave.
I understand you to a great extent. I’ve been struggling with mental health for 4 years. First 2 years they just said ”You most likely have some sort of depression/anxiety disorder and you could see this psychologist like 5 or 6 times. Then I finally got a referral to psychiathrist who slammed me with 2 personality disorders every professional has disputed since. But now all is quite ok. I have a good doctor and a really good therapist. It is too tough but in the end, there can be good help.
I can relate so much to wanting a diagnosis to justify and explain your pain!
I was a collegiate volleyball player and during a practice all of a sudden I could not exhale. It was extremely difficult to breathe at all and was terrifying. I spent a very traumatic hour with the athletic trainer who literally saved my life, but after all of it was over, I was left with debilitating pain for months and the doctor told me I was over reacting. I was in pain, I had high blood pressure and a heart rate hitting 200 as a 20 year old. They did so many tests and imaging and told me to give it time, that I would be fine.
I am a physical therapist assistant so I knew that what I was experiencing was not just going to go away. It took months of my own research to finally figure out what happened with the help of the trainer who was the only one who believed me because she saw my pain daily.
Even though the diagnosis did not change my treatment or management, it did give me piece of mind to know that it was real, and that there was a reason for my pain. It did not matter for anyone else because no one believed my story or diagnoses anyways because it is rare, but it made me saner.
I love your channel to make me a better therapist by understanding the life of an amputee, but it also helps me to just be a better and more empathetic human by listening to your stories. ❤
It took me over a decade to be diagnosed with ms. Being told it was all in my head, it's normal for women etc etc. - I was soo relieved to get a diagnosis after soo much dispair.
I should have been diagnosed 2years to when I was...but noone ever saw my LP results...I had to go through a second more traumatic LP to confirm it.... Permanent damage from both LP but now I have PTSD from the last one.
I have a diagnosis with bpd yesrs ago. now with my ms diagnosis. And having PBA it seems that diagnosis is now in question. Something that has somewhat defined me for many years is something else. But will they change that diagnosis? Nope... Both diagnosis suck but one comes with serious biased issues. Where the other is seen simply a medical issue... Guess which one I have...
It took my psyc ten minutes to figure it out because if my clear ms diagnosis but she can't do anything.
- my friend was being told by nurses irresponsibly he had ms and he'd die young because of it yada yada. He phoned me in tears terrified. I'd only recently been diagnosed I had to tell him they were wrong with how ms is etc etc. And I actually told him outright it sounded more like FND, told him to get into physio asap and force them to do all the tests. Sure enough he has FND. And he has somewhat improved with physio. He went from wheelchair bound to being able to stand and walk short periods again... Why would nurses who don't know about ms spread such horrible misconceptions to a valnerable person (he has lots of mental issues, PTSD and ADHD included)...
I'm sorry for the trauma you experienced in the LPs. And I'm so glad you could comfort your friend ❤ I had a strange neurological episode earlier this year that landed me in A&E and I got told it was FND. I thankfully have fully recovered. By the time I was seen as an outpatient I was better so they couldn't examine me more. FND was one of the scariest things to happen to me.
I have hEDS, so like, firstly I get it.
But one thing that may be important to consider, is that you've CONSIDERED this too. I believe I remember you mentioning that, right?
I have chronic migraines. Sometimes it's triggered by food or whatever, but some of them are also created by my neck muscles. They're too weak so my joints are stressed. The muscles are always tight, so it builds up into my head. It's the WORST. And some times it's more worse than others. (Honestly right now I have biofreeze on my neck and am constantly aware of where my bottle of Excedrin is, debating if I should take some.)
But maybe you should ask a rheumatologist to assess you for joint laxity in your neck. Who knows, maybe changing pillows or wearing a neck brace can reduce the frequency or duration.
Worth a shot. Hope you peace and many, many good days Jo.
My dad started getting these really weird episodes where he would get extremely sick he would have diarrhea and he had other symptoms but it was really bad and then he would have a really bad hot flashes where his entire body would turn red and then he would get really pale and he would get cold and his body would shake. He had these undiagnosed episodes a few times a year for 20 years and in 2015 he had his really bad one. He had pasted out and was taken to the hospital and he had to be in the hospital for a few days and he had all of these tests. Once he got home from the hospital he had to be on all of these diets and had to do different things in his daily life because it took such a big toll on his body.
Now no one new what these episodes were so my dad finally decided to go to Mayo and try to figure it out. So my entire family went there for over a week. He took countless tests and saw dozens of doctors and finally he got a diagnosis which is where his body goes into anaphylaxis at any point in time without him being allergic to anything. His episodes have gotten better but this year they are starting to flare up again so we might go back to Mayo to figure things out.
So my family and I both know exactly what it’s like to want a diagnosis and have these crazy things happened and wait forever to get tests and see doctors .
Btw I live in Colorado too and I hope one day we will run into each other
"Amorphous" is the word you were looking for, I think. Still not sure how to say it. ☺️
I relate to what you're saying.... I was waiting for a diagnosis of sleep apnea for some time, and when they called me to say the test came back normal I sobbed. That feeling of "something is wrong and they won't give me an answer." I eventually did a proper sleep lab and I do have sleep apnea, but it was a long process to get there.
I think it's fairly possible that you had COVID. I just saw a study that said the lowest false negative percentage for the most common COVID tests was 20%, at eight days after onset of symptoms. Anytime before or after that the false negative rate was even higher. I was tested at 20 days after onset of symptoms (the soonest I was able to get tested in my area), and also came back negative. But I have had lingering breathing problems requiring an inhaler and a course of prednisone to take down the inflammation in my lungs. I'd be interested in getting an antibody test if they ever become available!
They're available, at least where I live. But, they aren't just around the corner, I'd have to go a few miles. I was really, really, ill with what I thought was the wickedest flu of my life. Gave it to everyone at work (had to come in for a couple of days, no one was trained to do my work), and now we all wonder.... I may ask my GP if I can get one closer to home.
There are antibody tests going on in the UK at the moment I think. Hopefully soon they will reach wherever you are in the world ❤ glad you have recovered
the feeling of knowing what's wrong with you, after having terrible symptoms, it's complicated. You are happy that you can rationalise what wrong. I got misdiagnosed 12 times for ear pain that turned out to be tumours eating through the back of my skull that led to a doctor saying that we needed to chop off my exterior left ear. Knowing that I had tumours, was upsetting but also I was relieved. I was relieved for the answer I was given. It was something to rationalise.
I totally understand all of those feelings. I've had a chronic cough for the past 3 years and no one can tell me why. I've been to tons of specialists and done tons of tests but no one can tell me what's wrong. Sometimes, it'll get close, but end up being wrong.
I’m so sorry you’ve had to deal with that Catie...it really can be so agonizing. 😞
Jo, I don't know what it's like to be misdiagnosed for something, or to have chronic pain, but I did go the first 15 years of my life undiagnosed with ADHD, but knowing I had all these "behavioral issues" holding me back from keeping friends and doing well in school, and the relief I felt when I finally got diagnosed was huge. It totally makes sense why you would be frustrated. I'm also really glad that they didn't operate on your brain before, even if you had to shave your head etc..
Just found this video and I have to say it’s nice to hear someone talking about this general topic. This was something that happened to me in the past, mainly because the specialist didn’t believe me. The disease I actually have is rare, but ultimately way less serious in the long-term than what I was diagnosed with originally. I was put on a low sodium diet and told at one point I may need a kidney transplant due to the misdiagnosis. In the end when I got my correct diagnosis all I actually needed to do was take a medication twice a day, that’s it. The medication isn’t even one that really causes side effects, it’s literally just replacing a hormone that my body doesn’t make enough of on it’s own. It was very frustrating at the time but that doesn’t mean I don’t trust my current doctors and believe that they have my best interest at heart in the end.
I’ve been dealing with migraines since high school. 3 years ago I started having bouts of vertigo, 3 years in a row I needing up going to my doctor who told me to do the Eply Maneuver, this only made me feel worse. Finally, I was referred to an ENT... he diagnosed me with seasonal allergies causing my ears to fill with fluid and the causing the vertigo. But to make sure that is what was actually happening and it wasn’t a benign brain tumor (my ENT’s actual words), I was sent for a brain MRI, where I discovered 3 (I believe) brain lesions. I was told to come back in to the ENT, I was told that I could possibly have Multiple Sclerosis and he referred me to a neurologist... who then referred me to a neurologist who specializes in headaches and migraines. His first words to me were, “you don’t have MS, how long have you had migraines?” Needless to say, we’re working on getting them under control with a monthly injection (after I failed all the oral meds). Things are starting to look up. But seriously, I was terrified to be told that my vertigo and headaches could be caused by a brain tumor and then to hear it could be MS was so much scarier to me.
Please read! Resources for you, Jo! : ) See # 1-6 tips/info also below. Craniocervical Instability (CCI)...vertebra move too much from side to side and/or Atlantoaxial Instability (AAI)...ligaments supporting head are too lax and head falls down some (even a little is bad...upright cervical traction by a skilled manual therapist/PT can give clues and invasive cervical traction is the step to give a definitive answer before surgery...which is to prevent head from falling down too much onto neck) onto spinal column and hurting brain more from below whereas Chiari is impinging it and too much pressure from above. Intracranial hypertension or hypotension seems likely w/ the headaches and nausea as well and these (one, the other, or undulating between them) are quite common in structural neck issues and EDS. Just a thought. This mentioned CCI and/or AAI instability yanks on nerves in the head and neck...and triggers chronic migraines for many affected. MANY chronic migraine patients also are leakers. If you wake w/ a bad headache its a sign of neck instability and/or intracranial hypertension (pressure increases as CSF replenishes as we sleep) whereas could also have neck instability but headaches that come on later in the day regularly more commonly go w/ intracranial hypotension as this indicates a leak is occurring and low intracranial pressure can trigger wicked headaches, migraines, and nausea from low pressure. People can self-seal or to a degree. Patches are helpful but leaks often reoccur if have other structural spinal issues that aren't addressed and causing the high pressure which makes dura blow somewhere which causes a leak and low intracranial pressure aka intracranial hypotension. CCI, CCJ instability and likely at times high or low brain pressure (had a leak) is the case for me. Pains and knee bothering you and fatigue and immune dysfunction and big fallout from an injury...connective tissue defect like a form of EDS. When you talked about training for physically demanding high impact (a no-no in EDS) I cringed! I have really tried to reach out and provide info but idk if its been seen. I know the pain of missed diagnoses and misdiagnosis. Personally POTS/OI took me 9 yrs for diagnosis or help (a pediatric cardiologist did a holter monitor and didn't consider severe exhaustion which meant my feet were up a lot to prevent orthostatic symptoms...instead of the proper test for it, the tilt table test)! Endometriosis took about 12 years for diagnosis! I didn't want to be a complainer but I mentioned my pain, was blown off (at a dead end I asked the gyno NP about seeing a GI doc maybe b/c needed answers if gyno didn't care to investigate and had constipation...I was only 18 or 19 by then...she said I "could try that"...I had no idea about endo then or that constipation and bowel pain and dysfunction are SUPER common in endo...also this clinic had an OB doc but no gynecologic surgeon so when I figured out I likely had endo and pressed her she said if i really wanted she could refer me out to be checked for it but there's nothing they can really do except birth control....which is false...so why know for sure why you have pain? Omg...and that her liver had gotten stuck to her intestines or something and apparently she has it but "just gotta live with it', I told to live w/ it and endo not explained, wasn't treated, and no laparoscopy to diagnose or remove it. Took 2 ablation/coagulation surgs w/ MD elsewhere (those types of endo surg are unfortunately most common but leave lots of endo behind to grow b/c can't remove it from organs w/ this method) surgeries that were unsuccessful in providing any lasting benefit to learn on my own about the gold standard, thorough wide excision surg that endo specialists do to thoroughly remove endo incld off organs but my local OB-GYN doc never mentioned it or that its an option...probably b/c she doesn't do it and they wanna run you out of all options first w/ them. Perhaps 3 non-productive surgeries in she would have mentioned it! idk. Phew! For you: 1) I'd consult geneticist Dr. Golder Wilson MD PhD (he has a website called Kinder Genome and does Skype consultations as he is part time now due to pretty bad arthritis...but he's so nice and knowledgeable!!) who is a general geneticist but specializes in EDS and related chronic illnesses...he's familiar. hEDS involves hypermobility and pain but there are yet to be a known gene that causes it...though it is familial. Other forms of EDS have specific genetic ties. Another option is contacting Invitae and having their EDS panel done...many insurances cover it and I THINK you can work directly through them for them to order it for you and talk w/ one of their genetic counselors about results. I have a family HISTORY of joint hypermobility, early age onset osteoarthritis in family members, them needing multiple joint replacements (type of EDS determines what tissue is lax or weak), mom has scoliosis, I have Kyphosis, pain going back to childhood and lots of subluxations back to childhood YET my local geneticist MISSED my diagnosis. So need EDS SPECIALIZING geneticist. My local one said he knew about it (probably like vaguely from school) but he was the least thorough in his Beighton clinical test on me than my autonomic neurologist (EDS super common in POTS patients he works with) who said I undoubtedly have EDS, my physical therapist who 1st discovered I had it was more thorough than the local geneticist, and my Regenexx doc was far more thorough. So, ya, EDS-specializing geneticist is super important! Laxity causes pain b/c neuronal structures express danger w/ pain when they're stretched...EDS allows more stretching of surrounding tissues than nerve tissue wants to give/stretch. 2) Dr. Paolo Bolognese (neurosurg) in NY does Skype consults and is a pro at EDS, chiari, and neck instability. I personally wouldn't see other doc who specializes in EDS, Henderson, b/c of the NDA you're required to sign. 3) FYI CCI shows on Dynamic Motion X-rays (segmental instability), upright flexion-extension MRIs some, flex-extend supine CTs some, flex & extend x-rays miss some people b/c they don't show what is happening internally to the spinal cord and brain structures with those movements. You can have totally normal supine MRI fyi!!! I did. Common! It does NOT show the neck functionally...it rather shows it supported, static, and supine which is NOT realistic to daily functioning and movement or TOO MUCH movement! 4) Sooo many ppl missed b/c of lack of EDS knowledge! My UCSF headache center (one of the only places on west coast like it) doc only treats skull and upwards...when chronic migraine and head pain can be caused from instability in neck in EDS...and like 2 yrs into seeing her I figured MYSELF out and brought her the scans. She's very nice but she said they were JUST going to learn about EDS from docs in Europe when this whole virus thing happened. But that's a trash excuse b/c there's a (I believe yearly) EDS Society Conference w/ fantastic presentations (avail FREE on CZcams) on headaches...types, causes, treatments in EDS! 5) Peptide therapy...M4 at Center for Occupational and Environmental Medicine is something I'm looking into. There's also BPC-157 and Thymosin peptides avail elsewhere. Some of these are injections. I have heard of pretty good, pain relief, to absolutely anazing experiences w/ peptides. Dr. Jacob Teitelbaum did a study using them recently in some chronic pain and fatigue conditions and the results were quite good. The FDA took some off the market to review them but some still on the market. I'm investigating peptides. My chronic illness specializing doc was set to go to a conference on them in Aug or Sept but not sure now w/ virus etc. 6) Regenexx...the only ones I'd trust for prolotherapy...autologous stem cell and PRP prolotherapy. They are the inventors of orthopedic stem cell therapy. Founding location is in Broomfield CO. 9+ yrs safety data. Dr. John Pitts is skilled, fantastic. Ins unfortunately doesn't cover even though prolotherapy has been around for like...60 yrs and often is ppl's only alternative to fusion! Was in Europe prior to U.S. Regenexx has published MANY studies on the benefits and safety. The thing is, if it's not just an injury but connective tissue defect like EDS (can't say for sure but you should be evaluated by an expert in EDS...some PTs are ignorant but a few are very familiar, 3 PTs missed it in me over thr yrs or rather they may have just not mention it but a women's health PT who sees a lot of women w/ chronic illness...mentioned it and did a clinical eval Beighton test on my 1st or 2nd appt!)...you likely need peptide therapy or something to reinforce or rather maintain Regenexx's wonderful work if have EDS vs "just" an injury. W/ EDS don't necessarily rebound from whiplash or neck injury if neck already compromised THEN further injury. *Which is why it's super important (from my experience) to wear a soft cervical collar if driving or perhaps hard collar as passenger, to prevent further neck injury, damage, and more chronic migraine...
thank you whiplash Jan '17! Regenexx helped me a lot but my body simply isn't maintaining my connective tissue well whether its the collagen defect or ME/CFS (many fellow patients have destruction of or laxity in neck ligaments; supporting structures...Stanford and UCSD are trying to elucidate why...high hydroxyproline has been found in the female ME/CFS population esp which is associated w/ collagen degradation). So, onto the peptide journey b/c personally I don't want a fusion BUT if don't get neck more stabilized by some means (and PT can actually loosen neck or joints in EDS...gotta see how you do and be careful), looking at more premature neck degeneration. Its already there to some degree per my CT/A last yr at 27 y.o. And my dad is 70 but has severe neck degeneration. So, prevention and neck stability is important.
P.S. That pillow you showed on IG looks like potentially a good start re supporting neck. If you feel pressure and pain from laying on your back on a pillow though, consider the Therapeutica pillow that cradles your head when laying on your back and takes pressure off your neck and CCJ, has side wing parts to support side sleeping also. Amazon has a knock-off for $45 (only 1 option I think), whereas the Therapeutica one is $90 but different sizes according to your measurements and can choose firmer or softer option.
So many things! Just thought of this. W/ EDS peeps (depending what type and what types of collagen affected), they sometimes don't heal great or heal slower perhaps. Your 1st amputation! EDS COULD be a factor in why that didn't heal up ideally. Some EDS peeps whose skin is affected get streched out looking scars, I do not. But I also don't have classic EDS (its one of like 13 forms) which tends to affect the skin and those ppl have really stretchy skin. I don't. Rather have hEDS and a collagen gene mutation tied to Myopathic EDS but I don't have that and its believed by Dr. Wilson that this mutation will probably be linked to hEDS in the future. Clinically I have hEDS. And this is not an uncommon combo in his practice.
NOW Foods Chicken Bone Broth protein powder (on Vitacost) is the most reasonably priced form of bone broth protein powder I've found and when my neck was scary unstable I started this on a hope and a prayer and within 3-5 days I had improvements...to where I could be upright and not have to hold the back of my head up to take pressure off the craniocervical junction (CCJ) after a complication from a thyroid biopsy left me more loose. The powder^ ONLY disintegrates into boiling or near boiling water and I can tolerate it fine w/ bullion (I prefer the powdered Knorr one that doesn't have MSG and says natural or something)...tastes like slightly strong chicken broth. Otherwise, nope. It helps me! However I burn out on the flavor over time, but you do what ya gotta do. I am looking at peptide therapy for another layer of improvement.
I’m just binge watching all of your videos ❤️
Technically yes you could have chiari on one MRI and then years later not. Some neurologists/neurosurgeons won't count it as chiari unless the herniation is more than 5 mm, while chiairi specialist neurosurgeons are aware that less than 5 mm can cause symptoms. If you have EDS, the measurement in a supine MRI might not reflect what is actually occurring. The argument is people with EDS should have upright MRI with flexion and extension views. Tethered cord can cause a pulling downwards. Spinal cord leak can cause the cerebellum to drop downwards, sometimes those leaks heal spontaneously. It might not have been a misdiagnosis at that time. I have a small chiari, basilar invagination, a bunch of tiny syrinx scattered through my spinal cord . I had multiple MRIs (flexion, extension, cine) , evaluated by a chiari specialist and determined I don't need surgery. My symptoms may or may not be related and likely would not improve with surgery. Ruled as incidental finding, however there is some research that perhaps people with fibromyalgia have a mild transient squishing of the spinal cord/flow of CSF... it just doesn't show up on static MRI. I still think the chiari/basilar invagination plays a role, meanwhile diet, exercise, lifestyle changes and life continues on. Invasive brain or spinal surgery is not on my "must do" list.
totally get what you're saying. it's not that you want that particular thing to be wrong with you, you already know something is wrong with you because you're experiencing negative symptoms, you just want to know Which thing is wrong so you can understand why your experience is that way. It's comforting to know the cause if your pain because if you can't identify the problem then you don't know how to fix (or at least reduce/prevent it). i think part of it is that doctors will do tests, and if they don't find anything they will sometimes imply or right out say that there's nothing wrong with you, because it's impossible for them to make a mistake because they're so smart. sometimes the tests will be quite bullshit too, like i tore my hamstring and got told "walk across the room" and because i have social anxiety i tried my hardest not to limp, bc i was paranoid of being accused of faking it. had the opposite effect and he was literally like. there's nothing wrong with you go home. that was the whole appt, nobody listened to me until like weeks later when they were like oh whoops yeah you tore part of the tendon that holds your hamstring onto your hip off the bone lol. now like 8yrs later i still regularly deal with pain and weakness from that leg ://. don't think they could have done much for it anyway but it's still frustrating not to be listened to. I've had a lot of similar experiences tearing and spraining joints, my joints are hypermobile which contributes to it. recently after injuring my wrist yet again i asked my doctor to send me to be looked at whether i have EDS, and she was very resistant. she was saying stuff like "that's not something you'd want to have" and "even if you do it's not like you can cure it". like, not diagnosing me won't stop me from having it. obviously i don't want to have it but if i did have it it would be better to be aware of it, and have it in my medical record so i can get better treatment in the event of further complications
It's been my experience that the "label" helps us describe what's going on with us without having to tell a long story every time. I lost the diagnosis, given to me by Dr. Bolognese, who deals with this stuff every single day and has been for 20+ years, of CCI. I have the symptoms, I have hEDS, it's obvious. The neurosurgeon who removed my diagnosis hadn't really ever done much with patients he acknowledged had CCI, and I was PISSED. The diagnosis explained a lot about what has been going on with my body. I'm terrified of seeing more doctors who might remove more diagnoses that explain what's going on. Because in part it also helps me keep my SSDI, and because then I don't have to explain this stuff to every single doctor I see. I also have cerebellar tonsillar herniation, but my posterior fossa isn't too small, so I don't qualify for Chiari. But I have the symptoms, and it would explain a lot. Eye roll.
This would royally piss me off too!
I have been decompressed. I had a 23mm herniation, I was very sick. It got bad very fast. I got sent to the right doctors quickly, a chiari specialist. My neurosurgeon was fantastic, I had 2 scares not the entire back of my head cut open. I feel 80% better and that's winning for me. Good luck on your quest for an answer, it took me 15 years. It always helps to know.
Love, Respect and Support. I know many who have been diagnosed and there is still no answers. I know more who are "Blanket" diagnosed as Fibromyalgia or... You are Sharing and Coping and doing so with Grace. Brava - Go You.
*many hugs* I feel ya! Though nothing is really lucky about chronic illness, I'm thankful mine was conclusively diagnosed with one blood test. I'm constantly amazed by your positivity, and your bravery to allow yourself to feel annoyed when you need to.
Aw you're so sweet, Kirsten! Thank you so much!
HEED THIS NURSE'S WARNINGS!!!
On your cough, you need to be checked for extra epithelial cells in your lung tissue. It causes dry, or productive cough, asthma type symptoms. Symptoms are a sign something is going on. It's like an engine light going on in your car. You don't ignore it because you know the problem will only get worse if you don't take care of it right away, or as soon as possible. Your body is the same. Listen to it. Write down date & time, and what you were doing at onset of your symptoms the moment you have them. Keep it in a separate book to take to your doctor. Often enough when a patient goes to the doctor he/she forget some of what they've been going through, also doctor's forget all what you've said, so have the doctor's staff photocopy your symptoms page for your chart. That way the doctor can go back and read it. The other frustrating thing is doctors often get interrupted during your visit which causes everyone to lose their train of thought on what needs to be covered during your visit. Doctor visits are scheduled every 15 minutes and always go over that due to doctors and nurses time management. The most important thing to remember about symptoms is that sometimes that one symptom your forgetting to share with your doctor, whether it may be embarrassing or not, SHARE it because that could be the missing link to getting the real and truthful diagnosis. We as humans try to put off things going on as something else, the very first thing is to be honest with yourself and don't listen to other people's diagnosis as your own. That just causes needless anxiety and confusion. Trust your own gut what you think it is, only you know your body inside and out. Try to refrain from looking everything up online because that just leads to needless worry as well.
I completely understand what you were going through with being misdiagnosed because it actually happened to me a couple of times. 3 years ago I was bitten by a camel (don't even ask how that happened 😅) and the doctor took an x-ray which was ok and then just put a splint on me and said that I just have to wait, even though I couldn't feel or move my finger. the only thing I felt was intense pain. after nearly 3 years I still can't move my finger + it still hurts, but after all this time of going to different doctors I finally found one that wants to check more in detail with an MRI. so in the next few weeks I will find out if I'll ever be able to move my finger again.😊
another perfect example of being misdiagnosed is that about 2 years ago I slipped and fell on my wrist. the doctors couldn't find anything and sent me away with a splint and a wrist which was so swollen that I couldn't even move my fingers. after giving it about 3 weeks of rest I had to start writing again to write tests at school. due to this I had a very sharp pain in my wrist. when I went to the doctor, all he said was that it's inflamed and that I have to put the splint back on and let it rest. but after like 2 weeks I ofcourse had to write again at school so I got the next inflammation and this literally happened over and over again until they sent me to a specialist who couldn't help me, so then they simply sent me to ergo therapy without even having a diagnosis. my ergo therapist figured out that it must be chronically inflamed and that my muscles are super tense. a couple of months later I unfortunately hurt my other wrist as well and got an incredible misdiagnosis. when looking at the x-rays the doctor said that there was no fracture but just to be safe he put a huge splint on me which reached from my fingertips to my elbow even though you actually should never include the fingers on that. 3 days later for luck only his colleague was there and after looking for like 5 seconds at the exact same x-ray he immediately said that it was fractured and that I need a cast.
and here I am today at 19 years old with splints on both my chronically inflamed wrists and one on my kind of stiff finger due to many incompetent doctors 😓 and I honestly gotta say that I don't trust doctors anymore😶
I really appreciate you talking directly to those who have gone through illness... it’s definitely something that not everyone understands
I'm so happy for you!
That's a super cool feeling when you get off pain med's I've gotten of pain killers about 5 times in the past eleven years due to no insurance / moving to different states- doctors/ but the first time was because I did not want to be chained to med's after 5 year's of pain management stayed sober for 11 months and decided to go back to PM and also no alcohol started going to AA & much more searching for why I'm in chronic pain- after all this what is more important ( Me being substance Free or taking meds so I can function at a "normal" level- I was pondering if it is a appropriate question to ask you- figuring that your story is so similar to mine ? - I've been riding motorcycles since 1995 ( at least 2 reconstructive surgeries along with over a dozen of injury's) so being sober or being functional for today's standard. Where's your stance on this stuff. Good thing they did the right thing and didn't open your head someone was looking out for you!
I bust my knee. I got as far as asleep on the table. They changed their mind for another reason than it didn’t need doing but like you I was outraged. I was nuts. I couldn’t use my leg and they didn’t do it.
Angry as ass I went to a different doc. He told me I had not got what they had said. That I didn’t need a ligament taken from one side to replace the other and spend months in a chair and rehab. All I needed was like a power wash and a tidy up. A week later he did just that. And immediately I was better.
Like you I get so many migraines I used to get them nearly every day. My longest lasted 6 weeks. Yes weeks. But they tell me a brain scan won’t tell them anything. But they never did one after I broke a car steering wheel with my head and seriously broke my face. So. How can they be that sure.
I understand the feelings. I deal with a lot of chronic stuff, including intracranial hypertension, and back issues. A doctor recently told me that my back was not “as bad” as I had been told. So, yeah great... but why am I in pain? I’m in the medical field too, so I get frustrated. Just keep doing you best, as you do every day. Thank you so much for your honesty!! ❤️
Say Jo, have you ever considered consulting a Gonstead chiropractor for those migraines? A college friend of mine told me he had terrible migraines in high school, which really compromised his ability to concentrate & thus learn. Tried everything, doctors couldn't pinpoint the origin of the problem; told his parents he would just have to learn to live with it. But they were desparate, so they went to a specialized chiropractor (not the kind that just goes through routines, but the kind that really locates problem spots). He had his cervical spine adjusted, which freed a pinched nerve. Problem solved.
Now, you mentioned you had your right ankle shattered in a fall from a horse. What if your neck also took a hit from that fall? And the way you've been walking for the last sixteen years doesn't seem optimal either. That's bound to do something to your spine, the way the muscles have to compensate... Couple of trips to the chiropractor might be less expensive than all those hospital visits.
Hi Footless Jo,
I know where you're coming from.We as patients put so much trust and confidence in our doctors, only to be disappointed to know that they are just guessing. Even with all of their hi-tech stuff they still can't come to a accurate diagnosis. I found this out through my journey through the medical world. In 2016, I was having pain in my chest and lethargy and various other symptoms. I went to a cardiologist and they did an echo cardiogram and some kind of x-ray on my chest and a stress test. All these various tests and stuff and they told me, I have nothing to worry about. Guess what, it all came crashing down in 2018 where I had a medical crisis of an aortic dissection, ARDS, and then cancer. So the moral of the story is that doctors aren't gods, at best they are just guessing and we're all hoping, that they are guessing right. So take care and all the best to you.
Getting 2 medical opinions is recomended thing to do. I have empathy for the stress it put you through.
I SO understand this girl!!!! I’ve amputated my leg, and fixed that problem, but still have these other crazy things to deal with and still remain undiagnosed on one front. I swear you are my soul sister! Much love and lots of hugs!
I can definitely relate to what you are experiencing with this. That mixture of excitement and frustration can be very disruptive. I hope as this new information gestates for a while you will feel more comfortable.
I didn't expect this video to affect me the way it did. I put it on because the thumbnail appealed to me and it made me tear up. For so long (just a couple of years really but a good percentage of my life) I have been in so much pain that has spread and changed without ever getting better. I've gone through unpleasant tests and waited for results that came back normal. I realized watching this video that I've never heard anybody talk about wanting a diagnoses so honestly. I have craved a diagnoses because a part of me has always thought that my pain isn't real and isn't valid and that a diagnoses would change that. In middle school when I was first getting sick I told my friends I had a diagnosis to explain why I was missing so much school. I didn't have a diagnosis then and I don't have one now. I can imagine how disheartening it would be to get a diagnoses and begin to rebuild your perception of your pain and have it ripped from you.
I don't think I've ever heard anyone else talk about how hard it is to have pain without having a diagnosis. I didn't know that that was a feeling that other people had. I really appreciate you talking about this openly and vocally. It made me feel seen and it made me feel less silly for wanting a diagnosis, even if it wasn't a good one. Thank you
Chiari Malformation with syringomyelia over here! I knew exactly what you were gonna talk about! And I always tell everyone my brain is too big for my head! I had my first decompression June 20, 2014 and my second decompression with spinal surgery August 30, 2019! I had sooo many issues! There is no CURE! I’m a zipperhead!!! Every day is a struggle! Did you by chance get a second opinion on this recent MRI’s?
Thanks so much for sharing. The process of diagnosis and un-diagnosis is so hard, especially when you just want answers! Been there!
I have been stuck in this 'unknown'/'what the hell is wrong with me' situation for 7 years now with chronic dizziness that no one can seem to figure out even after all of the testing I have been thru which has in turn caused severe anxiety and depression. It's just the worst feeling ever. Sunday I go for an MRI to see if I have or rule out MS. But I have also been told by a phsyciatrist that im a hypochondriac 🙄 which is so frustrating. Im just trying to find an answer and I know im not just making it up. Thankyou for sharing your story!!
yuck, sounds like it might be time for a new psychiatrist. That's like the laziest and least helpful response they could come up with, and I hope they don't hinder you in seeking answers.
@@_GreenSkies_ thankyou! In still going thru the motions but meet a dead end Everytime. One day I hope I'll have an answer at least!
Thank you, thank you so much for sharing this story. It's so comforting to know that someone else goes through this. Your honesty and your story are so comforting to me and I am so grateful for you!
I get it. Just having a name for what I’m dealing with is incredibly validating. It’s NOT in my head (ha! Kinda funny cuz I have migraines too), I’m not crazy, exaggerating or making it up. Even if there’s not a damn thing they can do, just having a name for it helps me to deal with it better. It’s a kind of shorthand. Instead of having to explain all the symptoms you have, a diagnosis quickly conveys a lot of info. Like if I said I have the flu - you know exactly what I’m talking about just in saying that one word.
Also - I’ve had a similar thing happen. Major respiratory issues for over a year now, and docs kept dismissing it. Even though I showed them pics of the large, solid, yellow chunks I cough up multiple times a day (sorry, TMI!). Finally see a pulmonologist who says I have Bronchiectasis. Wow, that’s intense, but validating. They do imaging to confirm. Nope, no Bronchiectasis. Ok, back to square 1, and doubting myself. It felt like a loss, same as for you. Do I WANT something to be wrong? No, of course not. It’s that something IS wrong, and I just want to know what it is. With my lung stuff, fast forward 5 months. In the middle of this pandemic of a deadly respiratory disease, my new pulmonologist send me to the hospital for a dynamic CT of my chest. Really simple test - just a CT where they have you exhale. And now I finally have a name for it, right on the radiology report. Tracheobronchomalacia. Just as scary as Bronchiectasis. Basically means my airways collapse all the time. But having a name for it is powerful.
I hear you. I've got a group of friends who are all MDs in various specialties. Over the decades I've known them what has been the one thing that has amazed me? The number of times they have said medicine DOESN'T have all the answers! Over and over I've heard for every answer there is to a question, there are ten more questions they don't yet have the answer. They're frustrated, too!
Thank you for talking about this weird place of being undiagnosed with something. My son was diagnosed severely deaf for the first 6 months of his life, and the undiagnosed and declared totally hearing. Then he was diagnosed moderately deaf, or hard of hearing, and then after purchasing hearing aids and spending another 4 months with this diagnosis he was AGAIN undiagnosed to hearing. Multiple tests were done, multiple doctors consulted, and this is still his story. It took me years to walk through the weir place of dealing with that emotionally.
I was called crazy for many years until they noticed after about 10 years I had broke my back in three places! Then I was told I was fat because I was lazy. I almost died and then they diagnosed me as hypothyroid! Needless to say I have little faith in doctors. I love nurses they seem to me able to think outside the box.
TOTALLY get this! And trust me, I was diagnosed with ME, Lupus, Hashimoto's, Fibro, Gullian-Barr, Parkinsons, Alzheimer's, arthritis, neuropathy, mitral-valve prolapse, and the list goes on for almost a page. So, what did I have? Freaking Neuro-lyme disease and a host of co-infections. They told me that Lyme has 350 symptoms and can mimic dozens of other diseases! Smh......so get what your saying....took them more than 40, yes, FOURTY years to get the diagnosis right!
I went through something similar with the same thing!
I was involved in a brain imaging study for years and years when I was young. It ended around 7th or 8th grade when I got braces and couldn't do the MRI imaging. And then when I got the braces off the study had lost funding.
So I don't remember this at all. But they told my parents I had this malformation but on a scale of 1-5 on how sever it was it was like a 2. My mom remembered this when I turned 20 and developed disautonomia and the malformation is a common comorbidity with disautonomia so I asked them to be on like, extra look out or something.
And they didn't find it.
I had at least 5 MRIs growing up, maybe more, and this malformation was found by these researchers and listed in my medical file and ???? Suddenly it's 8 years later and I just don't have it ??? And the loss of the diagnosis is based on one MRI.
I forgot what triggered this, but my dad, who has memory issues and would not have talked to my mom about this, brought up that I was diagnosis with this malformation as a child 3 years after the dysautonima diagnosis.
I'm just weirded the hell out. I don't know what to believe.
I just began watching your videos (this is only my 2nd one). You have a certain personality about you that is simply excellent. Definitely subscribed.
I too am going through some weird health things that doesn’t seem to be fully understood and to which only time can heal (to the best of my knowledge)
This has been more of a marathon than anything else I’ve been through.
What you said really resonated with me and I look forward to seeing more of you’re videos.
One day at a time!! : )
I totally get you Jo.. of course we don't WANT to have a diagnosis, but at the same time it's so much better actually knowing what's wrong when something's wrong, then to not know! You feelings about this is SO valid Jo ❤️
When you don’t know what’s going on with your body, you want to know. Totally get that. And the frustration and tears and emotions. I think it’s amazing you are dealing with your migraines. Wow!
I am also a chronic migraineur to the point that, if I am not medicated, I am in a literal constant migraine state with spikes in intensity. I'm thankfully able to manage them with daily medication now, but when I was first starting my journey through pain management, I was frequently upset by the lack of knowing what's wrong. I remember crying after getting the results of my MRI because I didn't have a brain tumor or lesion. I didn't want to have either, but they would at least have been a known "enemy" to fight. Knowing something is wrong but not knowing what it is is terrifying and invalidating. It can also lead to imposter syndrome or feeling like you're just a hypochondriac - even worse, sometimes doctors will treat you that way.
TL;DR - I know the emotional toll that not having an answer can take on you. You are not alone.
I just today actually read an article about over-diagnosis in the Western medical world in recent decades. Because of all the technological advances doctors tend to over-diagnose people. And just think how incredibly harmful it could be for someone to get treatment for their condition even tough it is not critical/bad enough or not even there in the first place! It just made me realise how over diagnosis is so dangerous and I think it's totally fair to be upset about the fact that they were going to cut your skull open for something that wasn't there!
I also like to think all doctors have their patient's well being at heart and want to help them, but sadly there are too many medical professionals who rather go for looking good/smart. It's such a hard and twisted thing.
I hope you are doing allright Jo, take care
I've always said that a new diagnosis gives me new tools to put in my toolbox, even when there aren't solutions.
My favorite migrain tool is neck traction, if you haven't tried it 😊
Also, I know a lot of people who are very knowledgeable on Chiari and the cervical spine instability world if/when you want to dig into what is going on with your brain and why it looked like Chiari. Positional change is just being found to have an effect, and one of the best places to get imaging is in Colorado
Thank you for making this! Your feelings helped validate my own ❤️
I can totally relate!! My misdiagnosis was syncope when in fact it's seizures. Ugh years of syncope meds and not helping.
yes! that's been my life for like, 7 years now. I have one rock-solid diagnosis (morphea), one fairly solid diagnosis (POTS), and then this cluster of neurological symptoms that don't really match my other two conditions. I keep cycling between "yes this is obnoxious let's see a specialist" and "I'm tired of doctors shrugging their shoulders at me." I'm on the latter part now, especially with COVID. And like you, I've learned how to cope with symptoms. But it being a mystery autoimmune disease, it has recoveries and relapses.
I've prepared for the day when I get a diagnosis: "Well, the good news is that I was right. The bad news is also that I was right." lol
This must suck so hard. I’ve personally got chronic migraines and a year or so back it got so bad I had migraines every single day. I couldn’t go to school or work and pretty much all I could do was lay in bed. It’s crazy good if you don’t have to take medication for it, but in case your migraines do get worse, there’s a medicine called Aimovig (or erenumab) that has helped me a lot. I’ve taken it as a shot once a month to prevent migraine attacks.Obviously, there’s a lot more that goes into your life than just migraines and Aimovig might not be something you’ve got access to or won’t help you, but it might be worth checking out! Please take this with a grain of salt, I’m not a nurse or a doctor, I’m just a fellow pal with migraines. Stay strong! I really hope you’ll find out what’s wrong soon, not knowing is probably one of the most difficult things to deal with when it comes to chronic pain. Sending love!
My sister went undiagnosed for over a year before finally be diagnosed with Lyme disease (along with other co infections). Because she wasn't diagnosed earlier the treatments have not been effective and she still struggles with the daily symptoms over a decade later.
I’ve dealt with chronic daily migraines for the last 10-11 years. I’ve been on literally every medication known to man. “Abortive” meds I’m basically allergic to them all. But needless to say I was put on Namenda (yes, the dementia medicine) about.a year ago. It started to help. But then I couldn’t really notice a change anymore. I had surgery a month ago - nerve decompression surgery. I live in Tennessee and my neurologist doesn’t do the surgery (I see a Neuro at Vanderbilt) but a plastic surgeon does do it. It has been so far one of the best decisions I’ve ever made. He told me my nerves were literally encased in concrete (aka my muscles were so tight and thick around my neck and shoulders, that was what was causing a lot of the problem)!
I completely understand being upset over losing the diagnosis. I lived a little over a decade with a assumption that the disease that nearly everyone in my family has, is what was causing the symptoms that I was and still very much am experiencing. Then as an adult I needed the real diagnosis to access services and for work stuff. After going through the really long 1.5 year journey through being tested...it came back negative. How?!? Anyways, thanks for sharing this story.
I know how you must have felt. I was diagnosed with prostrate cancer. One doctor told me I had 2 years to live. There are good doctor's and very mediocre ones. Fortunately I found a more responsible one. It was devastating at the time my family and friends were so upset. It has a lasting effect. I eventually had a type of PTSD had to get treatment from a mental health professional who was very good. That was 15 years ago. You might consider finding a good mental health professional. I am now fine