Woman Was Misdiagnosed By Doctors for 15 Years | Today
Vložit
- čas přidán 13. 05. 2019
- Stephanie Tait saw hundreds of doctors seeking help for her Lyme disease symptoms. Now she’s chronically ill.
» Subscribe to TODAY: on.today.com/SubscribeToTODAY
» Watch the latest from TODAY: bit.ly/LatestTODAY
About: TODAY brings you the latest headlines and expert tips on money, health and parenting. We wake up every morning to give you and your family all you need to start your day. If it matters to you, it matters to us. We are in the people business. Subscribe to our channel for exclusive TODAY archival footage & our original web series.
Connect with TODAY Online!
Visit TODAY's Website: on.today.com/ReadTODAY
Find TODAY on Facebook: on.today.com/LikeTODAY
Follow TODAY on Twitter: on.today.com/FollowTODAY
Follow TODAY on Google+: on.today.com/PlusTODAY
Follow TODAY on Instagram: on.today.com/InstaTODAY
Follow TODAY on Pinterest: on.today.com/PinTODAY
#LymeDisease #Misdiagnosis #TODAYOriginals #TodayShow
Woman Was Misdiagnosed By Doctors for 15 Years | TODAY
15 years.
These doctors should be held to account. Legally. It’s reprehensible - SHE figured it out. Of course.
Thank you GOOD,5 Butchers ,No Treatment,,STay out of Maine..My story,Not as groomed as this lady,Hope you enjoy-czcams.com/video/wRIWTXZwM10/video.html
Good Taste and Grace Yoir health is your responsibility....how about showing some interest in yourself and do some research, journal your system and adjust your diet.
@@allispossible8447 I do this. The doctors consider this a sign of psychological problems, proving that my symptoms are all in my head. I'm just too wrapped up and invested in being ill.
@@allispossible8447 when you have a physical medical problem if the Doctors do not find out what it is you could die that statement of you are responsible alone for your health is ridiculous if that is true why did the Almighty God put Doctors on this earth he did not do it for them to tell women they are crazy and shush them away this woman had legit debilitating pain for years now she has Heart damage from it all she can't even hold a freaking hairdryer you heard that part is that normal to you?
@@allispossible8447 some people aren't savvy or are in need of an advocate. The doctors should be the ones who are thinking, "what else could it be?" We pay them for their expertise and patients shouldn't be judged because of gender, etc. Some doctors rely on the "it's all in your head" tactic when they won't admit it's their own inadequacy.
This is far too common. A person is not crazy just because YOU can’t figure out what’s wrong with them! Smh!
I know. I see physical stuff not looked into too much with different situations. People don't realize how much the medical community falls short when it is really needed either with rare conditions or just cases that aren't as typical and common. Different tests won't be ran, then diseases or even cancer go undetected for years. It's scary. People definitely need to be their own advocate.
AMEN!!!!
its so sad and honestly is WAY too common like you said
Thank you
I can fully agree with her. You are not believed when you go in for pain. I had HORRIBLE abdominal pain for 8 years. Always centered in the same spot, and it would radiate around my back. I'd get nauseous, and dizzy (if it went on for a long time). No one would take me seriously! I am a pretty good sized woman. I would get told it was heart burn, gastritis, anxiety, and was told once that MAYBE it is an ulcer (that doctor was so rude too. He was so mean in how he spoke to me, he actually made me cry). I finally saw a woman who was a Nurse Practitioner. She actually LISTENED to me! She took me seriously and sent me in for a bunch of testing. She had a suspicion of what it was, and she was right. It was gall stones. I just had the pain in a different spot because I had an extra connection that no one else has, so mine wasn't draining properly. When I had it removed, I was told that mine was so infected that it fell apart as they were trying to remove it. I had to go on powerful antibiotics. Almost 2 years later, and I haven't gotten that pain since. I am SO happy about that! Vonda Dahms, you saved my life. Too bad that you moved to Milwaukee, but I hope you love it there.
STOP milk your belly will thank you
That would have been easy to diagnose. Very surprised he missed it.
@@linanicolia1994 Well I already knew I had gall stones. I was diagnosed with them when I was pregnant with my, now, 8 year old daughter. They said that it was the "wrong spot" for gall stones. I was usually diagnosed with heart burn, and it didn't matter how many times I said "I do have heart burn often, I know what that feels like, this is not it."
I am a RN, now disabled and wondering why I feel like my spine is 99. But I just read the first couple sentences of your comment and I knew it was your gall bladder. I CANNOT believe they missed that for so long! We were specifically taught those symptoms in nursing school. Our healthcare professionals are so clueless these days, it boggles my mind.
@@jackiesmith2801 they said the pain was in the wrong spot. It was just under my left ribcage. It got to the point that I stopped going to the hospital. I was sure they thought I was only going there to try and get pain meds. It wasn't until I had that pain when I happened to have an appointment with my Nurse Practitioner that she noticed something was seriously wrong. Plus my BP skyrocketed.
Of course the insurance company did not pay for it, as usual when we needed the most.
Yes! Insurance companies should be outlawed. We need a different system.
american healthcare makes me disgusted 😠
Rafael Castro you do realize that the company you work for designs your insurance plan and then the insurance company just hold up the contract ?
Brittany honey you do know every company does not offer insurance and only full time employees qualify AND MOST company insurance costs more than the state’s insurance. In MA I only make $45k and it costs $160 a month for my son and I HEALTH insurance our dental is separate for $80 a month. Mind you I pay $400 a month for daycare and $1200 in rent and $400 in utilities. Where is the money? Dont forget I have to feed, bathe and dress the child and myself.
Move to Canada. Screw American Healthcare.
I worked in a Lyme clinic for years. Unfortunately her story is all too common. I'm so disgusted with doctors attitudes for being complete inept in treating sick people.
Was that also the case in a Lyme clinic?? Please say I am misunderstanding your comment.
@@ABlessman no she’s talking about regular Drs.
Everything this woman said is unfortunately true. I'm an RN who was misdiagnosed for 16 years & almost lost my career because of it. The bias towards women is real. I've seen it on the other side as a nurse & because of my background I was properly diagnosed sooner. I was always treated respectfully & listened to until I gained 80 lbs. Women of size, lower socioeconomic class, & color are most definitely treated differently & that has got to change!
Agreed! This story brings up so much medical PTSD for me! If I had not had experience in the medical field, I wouldn't have gotten my correct diagnoses either.
@@LifeinBonnieland me too, so much😔
bully mama Same, I’m sorry, I know it sucks. I have Ehlers Danlos Syndrome classical, it’s been a long road to get here to dx ( 10 years!) only after loosing weight, hiding my tattoos on first consult w/ Docs and wearing Professional clothes & expensive jewelry to appointments was I taken seriously! Sad, but true! stereotypes exist and it really isn’t fair. I see it getting a bit better toward Women, but we still have a long way to go! Good luck w/ everything.
@@shellyrae777 I'm sorry to hear you've experienced this too. I have Ehlers Danlos too, the Hypermobile type! It's such an awful condition. And I agree, it's gotten slightly better but we do have a ways to go. Best of luck you too❤
You can add being old to that list.
I am so tried of Doctors being aloud to get away with causing harm by dismissing womens symptoms as in "our head" or as "attention seeking" I have had a friend that died due to this Doctors assumptions of "its in her head" . Definitely men are respected and believed and will receive treatment before a women does. 😢
Sadly still so true ;(
Quieshe Hope What you said is devastatingly true. And it is hurting women because we are not taken seriously when we know something is wrong with our bodies.
Quieshe Hope Agree.
@Jason and Julie Smith Julie im so sorry I hope your journey gets easier soon
Jason and Julie Smith keep trying. I found a great doc years ago, he died, or I would give you his number as he was head of the pain unit at a bug hospital. Try and write some good docs about your situation and see if one will agree to help you. Much love to you and your husband. Stay close to one another. ❤️
This is SO TRUE. My husband was taken seriously for his condition immediately. Me on the other hand, pain and symptoms growing for years. NOONE will draw a connection between them. They want to treat the separately.
Girl pls tell me you made copies of that paper and sent it to every dr that dismissed and ignored you. Pls tell me you rubbed it in their face lol
Good idea... if only any of those doctors would actually read it. So few have a conscience or any interest.
That seems childish and immature plus they wouldn't care anyways
twisted wolf legacy considering she payed them to help her, and they brushed her off saying she just wants attention, it’s very reasonable. Now she’s left with permanent health issues. Those doctors need to learn somehow.
I'm in school to become a tick-borne disease researcher (I read about this disease in science journals every day because I plan to find a cure or at least help people get diagnosed and in remission faster). Unfortunately, even after she sent those doctors her "proof", they would continue to tell her that she was lying. Doctors were not given the education to diagnose and treat this disease in school. They were instead told that it cannot exist in the chronic form (of course it can), and thus they tell people who are sick and legitimately dying that they're faking it, even after test results come back positive. It's really sad and I can't wait for the day that this doesn't happen anymore.
lol I hope she did too!
Please be your own advocate when it comes to your health especially if you are female and a woman of color just as she said. The doctors don't take you serious when you complain of pain. Do some research and let them know your pain is real and not coming from your head. If he or she is not listening to you, change your doctor. Had similar experience , changed my doctor and am ok now. Peace , love and good health to all who read this.
🙏❤
God Bless you Elizabeth ! This is all true ! Please check out my CZcams Channel !
I am a woman of color and have a very similar story to her but diagnosed with fibromyalgia. I hate it and I know more is wrong.
Elizabeth, she’s speaking legit facts!
@@shondarenee3186 I'm a white girl and I've been trying to figure out what's wrong with me for years.
Severe headaches, temporary paralzation, éxtreme fatigue, involuntary spasms, can't feel stuff that's hot or cold most of the time, ect
And they say it's probably depression.
I know many white people who deal with this same stuff. It's not a mainly black issue
I'm glad that she's finally getting the help that she needs.
So true. Lime disease kills
She is right about the first part of being misdiagnosed because she is female and docs thought she was being "dramatic" & wanting attention... But def glad her research, having a listening doctor, "being privileged" (in her own words) and testa got her to the diagnoses. Sad & reality...
me too! so sad that people struggling this much with lyme are often not taken seriously :(
My mother had a mastectomy several years ago and was complaining of extreme pain. She was blown off completely until a portion of a severed nerve was found in the biopsy sample. Doctors today are mostly in the “business” for the money, unfortunately. I quit the health care field due to the disheartening amount of doctors I worked with rushing patients in and out without proper care. I even reported several to the FBI for healthcare fraud. The FBI did nothing and as far as I know the practices continue to fail patients.
shannon--I'd like to leave healthcare too. Can I ask what field you turned to? I'm looking for ideas. I support myself.
@Speaking Truth oh thank you! I love England; was there years ago when I was younger. My heritage is English, Irish, Scottish. I feel drawn to that area of the world. I don't know how the healthcare system is run there but it surely is better than over here! Blessings
@Speaking Truth -so much better than our system! It used to be pretty good years ago but not so much now. I'll have to look into this further; you have me thinking now !
To make such claims, you need proper documentation and a good lawyer that may give you advice . The FBI is very busy and I doubt they would consider investigating healthcare fraud. Once in a while you see medicare fraud exposed which saves the government, a lot of money.
I'm not sure what type of fraud you witnessed, but the FDA or a healthcare whistleblower attorney might be more appropriate or interested. Or, the FDA might be in on the fraud. I was part of a huge pharma whistleblower case and it's usually a government agency that tracks down cases that may involve insurance fraud (esp Medicare or Medicaid).
This really really hits home. Ten years and several doctors for me. Watching her stop at the top of the stairs, hearing her talk about not being able to sit, hold the hair dryer (putting dishes in the cabinet was excruciating for me), the arthritis at a young age. Sifting through all the possible diagnosis lupus, RA, and fibro. Not giving up and fighting for a true diagnosis, her treatment. For the first time ever I don’t feel alone...
We lost my mother in law because she was ignored for over a decade and it turned out her “woman troubles” were colon cancer. Meanwhile, her husband always got interventions and tests immediately for milder symptoms. Absolutely unacceptable. It’s made me read up a lot more on health and wellness from credible sources because I feel I need to be ready when I seek routine or acute medical attention.
Inept medical establishment killed both of my parents. Sorry for your ordeal.
It killed my sister too she was only 26 in 1998 and was taking phen phen for years and it made a hole in her heart. She was morbidly obese and had asthma and died of cardiac arrest. She was an amazing person and never deserved that, nor did I. I'll never see her again. Never. This shouldn't happen ever. How does this happen it sickens me to my core. I tell my story all the time b\c I never want others to go through this horror.
zealandzen I’m so sorry to hear that. They killed my Mother too 😞
My grandma, too. 🤬
@@watchinvidzwatchinvidz7691 You should sue somehow if you can. I'm really sorry this happened to you and your family.
I'm very sorry. My condolences 🙏🏼 they are definetely really bad
All med students need to see this!
I'm here.
I'm here
Med student that Got Lyme disease here - For a while I was told I was getting “too excited” as a medical student and was just self-diagnosing
@@jonfredrickcasas8955
Not surprising. Women who go to doctors with complaints of various ailments are often told it's their imagination, we're used to it.
@@jonfredrickcasas8955 hopefully you'll find a cure 🙏🏼
My heart goes out to you! As a Doctor and Lyme sufferer, I know exactly what you are going through. Even as an MD, I got no understanding from the medical community and had to seek help from a few excellent naturopathic doctors who had an interest in Lyme and the empathy to understand what we who have the disease, are going through. I pray you recover completely!
John, how did the naturopaths help? And did you take antibiotics at the same time?
Sorry to hear of your affliction, and I hope you recover one day. Just one question: if the naturopaths are so great, why are you still suffering?
Can you please share the info of the naturopaths? 🙏🙏🙏
Hi Martin what is closest sickness to lime disease?
@@barankarpat3327 fibromyalgia
Other than the miscarriages, I have everything this lady spoke of. My pain started at 6 with no “diagnosis” until 19 with a throw all Fibromyalgia diagnosis. I am now 30 and feel like I’m just going to have to live this life forever. I am so thankful this woman found the help she needed. I pray she now will get to live life to her fullest. ❤️
Beth Hoskins This sounds like my experience nearly exactly.
Bee Keeper it’s crazy how similar our stories are. Have you been diagnosed with anything?
I would see a Naturopath, there's a lot you can do to improve your symptoms, especially a radical diet change
Beth Hoskins Many of my diagnoses fall under one main diagnosis...ehlers-danlos syndrome. (Fibromyalgia, benign tumor growth in my abdomen, pcos, cfs, anklyosing spondylitis, arthritis, histamine intolerance, severe digestive issues ..my stomach does not “empty” properly due to my stomach not digesting properly. ..) I have had years of being misdiagnosed, multiple expensive painful invasive medical tests. It wasn’t until after the birth of my third child that my husband began to actually understand the pain I live with because my body just gave out. He couldn’t hold my hand, gently put his arm around me to hold me while I writhe and cry in pain because just the weight of his light touch was so painful to me. He asked if it always physically hurt to be touched and held, and when I answered with “more often than not” he asked how long has it been this way and my answer was “as long as I can remember”. From that moment I knew I wasn’t alone anymore in this battle. I’m 41 now, I’m living “my best life”. I have pain. It never stops, but often it’s manageable- by that I mean I can get it down to a “4” and can function with about 3-4 “useable hours” most days.
Christine Paolini I’m assuming your comment is coming from an intention to be helpful. I can appreciate that.
I love that she also acknowledged her privilege while going through this process. Intersectionality plays a huge role in healthcare and contributes to the implicit biases within the field.
@Blob Monster yea her statement never said diseases target poor people or that rich people never get misdiagnosed. Its about how OFTEN. Poor people are more likely to be brushed aside. Women, other marginalized groups too etc. Theres stats and studies to show this
@Blob Monster She is not saying sickness she meant the Doctors don't listen to certain groups sad but true maybe they misdiagnosed Rob's wife for the same reasons they did this woman to them she's a hysterical dramatic woman? their words not mine if not she is the exception
@Blob Monster I am a 34-year-old woman with spina bifida and Hydrocephalus fluid on my brain so i needed a shunt at birth well when I was10 that shunt malfunctioned I was sick for over a year could not eat losing weight lost my skin color I have a photo in a dark purple blouse and I look like the color of chalk in the hospital but before this I spent a year projectile vomiting at home trying to go to school trying to function and one Dr, in particular, had the nerve to look my mother in the eye and say tell her she is not sick he believed it was in my head I was making myself sick like for attention or some crap like that meanwhile it was like straight out of the Exorcist puke on the wall and all that fun stuff sorry to be graphic LOL I was just really sick long story short Mama was upset when he said that to her
Stats and studies to show this LOL
Yay, you know all the right buzz words to look like a social justice hero
This story resonates so much with me. I was I originally diagnosed with myasthenia gravis but after getting a PTSD diagnosis I was told it’s all psychological and taken off all meds. I’ve never been my old self. Now I finally had testing done that shows an ANA of 640 which got me a referral to a rheumatologist. Numbers can’t lie. I just want validation and not to be told “you’re too stressed just see a therapist.” I have a PhD in psychology and know my body. Something is wrong. Fingers crossed I get answers next week.
Did you ever find proper help?
In hopin u have answers!! I have issues 4 drs arent helping!
Her husband is a great man! I love seeing stories where the partner has stood by their side through all of the pain and struggles instead of leaving like so many do which is so sad and pathetic.
I just got diagnosed with lyme disease today! After 9 years of searching for answers, having other diagnoses like depression, anxiety, attention seeking, hypochondriac, fibromyalgia, it was being a mother is tiring. I saw 2 GP, 3 Rheumatologists, 1 endocrinologist and 2 Psychiatrists. And they all assumed above.
I finally demanded the test because I have been getting worse especially the last year.... and FINALLY! This, this explains it. I'm thankful I live in Canada so the test is covered under the provincial healthcare system, but not many have that privelage or even being white.
The big picture is woman should be treated differently and believed!!!
Which province and test? I live in Canada and I'm trying to find someone to help me.
@@melissa377 Ontario. I just asked for the provincial health units lyme disease test
Did it help with new Lyme or chronic? I'm in sk but looking to check Alberta
@@melissa377 Hey have you had any luck? I am in AB, docs are gaslighting me. I found a chinese medicine doctor who sends tests through the states. About to book the test. How are you doing now?
@@theyawningfox , I started seeing a naturopath out of Calgary even when I live in sk. She covers Lyme, mold toxicity etc
Women medical “professionals”/doctors dismiss women just as much, if not more...
I agree. I am a go getter. Worked 2 jobs for 31 years. Never complained about all the pain I have had. Raising 2 daughters by myself. It is hard to get doctors to listen. God bless this family.
I appreciate the phrase “woman of size”. Feels very respectful. Very validating.
Renee Laventure courageous, even.
You can chose to not be “of size” lmao
Glad she pointed out the intersectional aspect of her journey vs others' situations as well.
I just found out in 2021, I was diagnosed with Lyme Disease in 2004, thank God I found the doctor's notes because now I can walk into my doctor's office and prove I'm not crazy!!
This is so true.. I have endo and my gyno told me it was just stress. Gtfo I know my body!
Stress is the go to diagnosis it seems. Chronicly ill and they just add pills say its stress.
It took me years, a diagnosis of pcos and a ruptured cyst for me to have surgery and get diagnosed with Endo. My initial doctor told me they didn't want to check for anything causing my pain because it would cost ME money and that I was in so much pain because I was at the "child bearing age" at the time. I never went back there.
not the same thing but I started taking injections for MS recently and had a kinda bad reaction the first time I took it with my nurse. I felt nauseous and lightheaded whatever, and the nurse said “oh it’s just stress and anxiety” HUNNY ITS ME GONNA PASS OUT IN 2 MIN WHAT?
Yep. Took years to diagnose my endo and still trying to figure out what else is going on with me
Not a necessary test...WOW....SHOULDNT THEY START WITH THE SIMPLEST MOST COMMON TEST FIRST?
I respect you so much. You didn't have to acknowledge other groups of women that have harder circumstances especially women of color because we are overlooked often so it is incredibly appreciated. We always need allies to bring these thing to the light. So glad for your continued recovery. ✊️🏾
I cried watching this. I was sick for all my life. I had stomach issues since I was a child doctors frequently tell me that I was making it up. I was 22 when I found out that I had Celiac Disease. I was so happy to have a diagnosis
I’m just glad she finally has an answer. I’ve been sick and misdiagnosed for 8 years now. They thought I had lupus, arthritis, Lyme disease, maladaptive nerve endings. And now fibromyalgia. It must feel so good to have an answer.
God she’s so self-award and conscious of things like privilege. It was refreshing to hear her speak openly.
I have chronic Lyme that went undiagnosed for years. Now i'm 25 and disabled by it. I'm glad people are spreading word about this serious illlness!
I gave up years ago when a Doctor at John's Hopkins told me my nerve issues were because I was too skinny. I didn't have enough fat to protect them. Would he have ever said that to a man? Journal what happens and when. Watch what you are doing and figure out triggers.
Riding the Road journaling is an excellent suggestion.
Riding the Road,
I think he would. Misdiagnises happens to men all the time too. Especially if they have physical illnesses that doctors are not educated on, and/or physical illnesses that cause depression-like symptoms.
@@ilfiore934 yes they happen to men but they happen to women more OFTEN
Nothing to do with being a man or a woman. It’s just a bad doctor
So happy you finally have a diagnosis and treatment! I have been through this for over 20 years, so I understand the changes and accommodations necessary for daily life and work. God bless and keep you!! You are a strong and persistent warrior!💔🙏❤️
This was incredibly validating to watch, being recently diagnosed with hypermobile Ehlers Danlos Syndrome after 40 years of symptoms. Everything she said is true - the feeling of relief to get a diagnosis is so powerful that at first you don't care if there's a cure. It's enough to not be crazy. *Then* the thoughts of a lifetime of chronic pain sink in and you have to process what has happened to your life. It's such an emotional journey, on top of the debilitating physical symptoms. I wish you much strength and energy Stephanie :)
You have chronic bartonella
@@sebastianromero420 no, random weirdo on the internet, I don’t.
@@NZKiwi87 lol you are an idiota
I was once forced during a hospital admission to take sedatives / strong anxiety meds because I was being « hysterical ». I had a severe case of pancreatitis and was in 10/10 pain. 🙄
I went to the hospital with acute pancreatitis but because it wasn't showing up in my blood work yet, they said it must be indigestion and sent me home. I was a 10/10 pain, right up there with childbirth, but they refused to take me seriously. I couldn't even walk out to the car. My husband called them back an hour after we got home because I was literally losing my mind from pain, when my blood pressure dropped and I fainted. When I came to he was on the phone with the ER telling them what was happening. They said I'm not an emergency case, it was probably now just a panic attack, and to wait until I could see my PC the next day. Hubby gave me a huge dose of sleeping pills to knock me out. PC confirmed the diagnosis the next day and was furious with the hospital. I'm still traumatized by the pain and how I was treated.
Brittany Golden whoa that’s a lawsuit. They failed to follow standard of care. They were negligent.
@@esterf7064 that's what I thought too! My PC contacted the hospital to address the way I was brushed off, despite reporting my pain level, being unable to walk, and other significant abnormal labs. The only response I was told she got back is that my labs that night didn't indicate pancreatitis and since I had been treated for a panic attack in the past, it was assumed I was exaggerating my symptoms.
Brittany Golden I would recommend to research on that and speak to a lawyer to see if you have a case. I was a student nurse like 4 years ago and the nonsense I saw in the hospital I was interning was appalling. What I learned in the classroom setting and what I saw were two different things. Regular folks would see it as standard. These hospitals would rather lie and minimize things to protect themselves. Lawsuits tarnish their reputations so they’ll do whatever to avoid it. Most cases you can tell it’s due to their negligence. Some RNs know more than the doctors however they are not authorized to diagnose. Doctor nowadays look through their phones or ask the RNs questions. Not many have prior knowledge. Also be careful if someone recommends a doctor. Sometimes people think the doctors are good because of word of mouth but they are the biggest frauds especially those with their own practice. They only want the money 💰 They would only do what is covered by insurance as well. Health care in the US is a mafia. Watch American Greed to view some cases.
catheseries Oh Geesh! I’m sorry that happened to you! I have had pancreatitis and the pain you feel with that is worse than having my two kids.
Thank you 🙏🏻 This story is also my story, almost verbatim. My Lyme diagnosis was 20 years in the making. Degrading, humiliating and extremely difficult in finding a way to be heard and not patronized. Thank you for sharing.
She is spot on. Something with woman with chest pain are often trivialized and minimized compared to me with chest pain. Glad she is doing better and her comments hopefully will change perceptions and open eyes of medical personnel
“You’re a mommy, of course you’re fatigued.” I got that line from my doctor when I could barely make it through the day. Didn’t have Lyme, but I was not well. It’s BS to be so quickly dismissed. And she is no longer my doctor.
You are very brave for sharing your story, and you do make a difference ,thank you!
So affirming. I had 2 yrs of crushing fatigue, brain fog and weakness I thought was just fatigue. Finally last pcp did a proper exam and sent me to neurology but he said in his experience women who are complaining of fatigue and weakness are really just depressed. Pcp sent me to a second neuro who made the puzzling face and sent me to a third for EMG/NCS which he said he was surprised to find I have both muscle and nerve damage. After a million tubes of blood, muscle biopsy I was told I have Inclusion Body Myositis. May is Myositis awareness month so read up on it and understand more about this rare disease than most of the doctors.The hallmarks are difficulty combing hair, climbing stairs and getting out of chairs. There are specific antibodies to delineate the 4 types and only one has no treatment, no cure... guess.Since each person has a different experience it is hard when certain MDs get upset when it either doesn't tick every box or has something outside the list making research and collaborative care vital. The hardest, biggest thing is being your own advocate because like Stephanie said, you start questioning your own sanity. Still "you gotta be..." is the theme song I live with. For everyone out there trying to get through the day,missing their old life, fearful where this new life is taking you.... I don't give up, You don't give up.
Cheryl Carlson that is what guitarist Peter Frampton has. He is doing his final tour because of IBM. 🎸🎸🎸🎸🌸🌸🌸🌸
@@melvynn11 I know. it sucks to stop doing what you love. Spread the word about Myositis so fewer women go through this
Cheryl Carlson contact me I have alot of symptons
@@kingkato2731 go to the Myositis Association website and read all that. You will need a neurologist for evaluation, then special neuromuscular neurologist to interpret all the tests. Takes a long time. Keep as active as you can safely
Cheryl Carlson um black with no insurance and bills keep coming um going to do it the god way detox my lympthatic system
Dealing with a host of endocrine issues right now, I appreciate your story so much!
Thank you for sharing your story. I can relate very much to many of the struggles and reactions you encountered on this journey. I also appreciate how real you are with your feelings. You are a strong, brave fighter and I am inspired once again to trust my gut and to keep fighting. Namaste 🙏🏻
Bless your heart.. You are now an advocate for women, all women. Those who struggle to be taken serious about health in many forms. A women of strength who suffered a chronic illness and more. Thank your for not giving up on yourself. So happy that you were properly diagnosed so that you have peace of mind and of heart.
May your health and endurance bless you with years of happiness.
Thanks for being you!
Lisa, from Salt Lake City,Utah
Oh my gosh, thank you so much for sharing your story. This has been my life for 7 years. I hurt all the time and have seen many doctors and I start to feel maybe it is just all in my head but I know it’s not. I wish I could get help, this gives me hope.
This is so awful, and my friends want me tested for Lyme, I worked on a farm. I have a friend in youtube with Lyme and she is in bed a lot, and I used to be better dealing with my debilitating pain from severe injuries from 3 large vehicles hitting me, 2 were trucks, and disease but my doc died. He was the only one that gave me injections that worked for the injuries, I still needed pain medication for the internal diseases. The bottom fell out when this happened. I have a nice doc now, but he is not helping me like my old one did, and I am having a very hard time. I already have enough bad diagnoses that started in childhood, with disease affecting my bladder and arthritis in my jaw. I can remember tick bites. The bladder disease that causes hideous pain, took me years to get diagnosed.
I understand how she feels about the shower. And getting worn out doing tasks people take for granted. The spoon theory is what you have to use for your energy. To have two small kids, and have that is awful, just think if the drs. had listened to her and got her Lyme treated early. This makes me hugely sad, because of women being labeled hysterical. Something that was done in the 1800’s. Now men with pain are also going through this. And children. Your dr. should not turn on you when you have some kind of horrible illness, he or she should be your champion in not giving up on you. My brilliant doctor was an oncologist and said my pain was as bad as end stage cancer patients. He wrote so many articles on dr.’s needing to listen to their patients in pain. I miss him so much.
czcams.com/video/wRIWTXZwM10/video.html
This just reminds me of what happened to my mom, but instead of it being a tick bite she was poisoned by her dentist with all the metal/amalgam fillings she had in her teeth. She was told she was hysterical, it was in her head (actually, it was literally in her head!), and there was nothing wrong with her. She had to get a hair strand test to find her mercury and, after a copper crown put on after an allergy test showed she was allergic to copper, copper were literally off the charts and she needed that crown replaced with a non-metallic crown and chelation therapy to remove excess heavy metals from her body.
The side effect of chelation is that it removes plaque from your arteries, so mom was the only person in there with normal sinus rhythm and also the only person there getting the procedure covered by insurance (it isn't approved for artery unclogging per the FDA). Please ask for composite instead of amalgam fillings in your teeth, and have them extracted and replaced by a holistic dentist that can remove them properly without infecting your body with more metals. Or you may end up like my mom, unable to work and unable to collect social security or disability despite her inability to work any job.
I have similar sensitivities and cannot have metals in my body without serious side effects - painful, cystlike pimples, anxiety, inability to control my anger. It's like my PMDD is on steroids all of the month instead of just during my luteal phase. The last time I had braces on, it took years and 18 months of daily, heavy duty antibiotics to get the zits to settle down.
My mother has the same problem. She's even allergic to the dentin filling. Took 2 weeks for the response to visibly appear though
Thank you. My lupus does that to me. I really understand and empathize with you.
Lorraine Lavender-Sams,
Candidiasis, or even Lyme can cause lupus too.
I cried through much of this video. This is my story! Thank you for sharing your journey! I wish you all the best in your amazing future! ❤
As one diagnosed with Psoriatic Arthritis and Fibromyalgia...you have to stay with a doctor who will keep testing...these diseases all mask each other and your DX may change many time. Stay with it, you can get relief. God bless you all.
Try yoga.
@@genofire3304 YT Notice says your reply is to me. Believe me, I have done plenty of research over the past 30 years. I was trying to help people understand that all auto Immune diseases mask each other and they may need to stay with getting properly diagnosed. I still am.
@@genofire3304 That's ok, friend. I think we all want to help share whatever information we have with others who are suffering because we know the misery. It's been 5 yrs since I could walk...Psoriatic Arthritis final DX. If I had stopped at 'Fibromyalgia', I would have been very illprepared. Take care, T
Hi Theresa Lyme disease mimics fibromyalgia and arthritis please have Dr run blood rest called Elisa,and Western Blot..which is specific for tick bites which cause lyme disease however they come with hundreds of coinfections.Look up bitten a book about it also podcast our govt threw them out airplanes since forties..probably still are.Lady interviewed the old men.I have it real bad 4 family member sis mis diagnosed MS bit in neck tick was there 4 days imbedded
Thank you for sharing your story. I’m glad that you finally got some answers. I understand exactly how you feel. Having to have health issues myself. I like the hair dryer adaptation.
God bless
czcams.com/video/wRIWTXZwM10/video.html
She is fortunate. I am still trying to get help for my Chronic pain. But I am happy for her❤️
She's a wonderful mom and good family. Thank God she got her answers!
Thank you so much for taking the time to share your story so clearly. I cried through the whole thing- it is my experience too, and do helpful to not feel alone or crazy! God bless you as you persevere in the best life you can live with your family & friends!
I get that too when I'm at the ER in extreme pain. I skipped the ER when my back snapped from a whiplash cough and it felt like plywood snapping, which thankfully wasn't a result of a disk rupture in my spinal chord, but having physical issues dismissed as purely emotional issues and attention seeking ploys is the biggest thing that keeps me from seeking medical treatment when I need it.
I am almost crying right now because I can so relate to this. it is just not fair!
Kesha Rhinestone, same here - i will refuse to go to ER at all cost because of Doctors and nurses attitude towards women. I always take someone with me to er or to Doctors appointments because I have found the medical staff will listen to them over the patient. I hope you are not struggling with chronic pain due to your back. 😃
I agree 💯! Unfortunately this last week there was no way for me to avoid it and I ended up in an ambulance and the ER. I was in so much pain and so uncomfortable and each one kept telling to stop squirming so much. Well then pain went away on its own. I passed a kidney stone. As soon as I was out of pain I stood up out of that bed and told them I was leaving. I felt very judged and written off but in the end the tests proved I was legit. Smh
LC Bailey, I an so sad to hear you had to go through that. I have had kidney stones all my life, due to my refusal to go get Help I nearly died! Kidney stones are not for whimps thats for sure! I would like to give you a tip, hope you do not mind. - If ever you have severe pain like kidney stone or worse and your body starts to sweat like your in a large water fall , the sweat is so much wiping the sweat off is impossable , get to hospital straight away do not wait to see if you get better. 😃
@Ziggy Z in my case, I don't have chronic back pain, my back just snapped in a shoulder pop fashion, but yeah, it was quite excruciating. I'm glad I didn't go though cause all they would have been able to do would have been to perscribe a prescription level dose of Motrin, which if I remember correctly from pulling a muscle in my chest thinking it was stress cardiomyopathy, the perscription dose is 600 milligrams
I am so unbelievably impressed with the self-awareness of this woman. Quite rightly stating all of the prejudices that were held against her, while at the same time acknowledging her own privilege.. that is incredibly admiring and she should be so proud of herself.
Thank you for sharing! What an incredible story!
My heart breaks down hearing this. Take care! sending lots of love!
i hate when they are like "it's all in your head" NO it's not, i'm sick and noone belives me
Welcome to Utah. Land of Prozac for all women's complaints.
Denise Shaw that I so rude just because your man you act like u don’t complain either until men in Utah stop asking for nudes then u can stop complaing for leaving u on blue balls
Thank you. What a tough journey. Really appreciated this.
what a strong, incredible woman. Having gone through so much herself and still have space to recognize that others in her place would've had it worse despite how terrible her own situation was i applaud her for that
I KNOW HOW YOU FEEL. IVE HEARD ALOT FROM THE DOCTOR THAT SAY THE SAME THING. IVE LEARNED TO KEEP GOING FORAWARD. I KNOW ALL ABOUT PAIN EVERY DAY. DONT GIVE UP.
i’m rooting for you
Extremely eye opening, in this day and age it's absolutely ridiculous
I was misdiagnosed on 2019. After rescuing a baby deer from our fence I cared for it , fed it goats milk and held it in my arms. I began having joint pains swelling and gaining weight. My Dr. asked if I was overeating !!! After months of pain and demanding an answer I took my son in to see the Dr. and ask questions. The Dr. said well we can do a lyme test but it will probably be negative. Lan was done and 2 were positive with 7 out of 10 showing Lyme. I now have Chronic lyme disease and started a month of Doxycycline thru a port. Went to infectious disease specialist but still in lots of pain😢.
I was diagnosed with depression and fibromyalgia. I am a plus size woman and my doctors absolutley refuse to look into my health issues. I have always known in my soul it is not fibromyalgia but something else. Still seeking answers
Belinda Pruett I to am a plus size woman. I didn’t use to be but the pounds kept adding on. I went through a lot of the same issues as this woman. Finally, I was diagnosed with Sjogren’s an autoimmune illness. Still after the diagnosis there was no help other than the doctors saying....you’re depressed, your fat, take another pill. I then found a Functional Doctor. A Functional Doctor looks for the Root cause of an illness. Unfortunately, insurance will not pay for a Functional Doctor because he does not prescribe pharmaceuticals. The Functional Doctor took tests that a regular doctor doesn’t do. This Functional Doctor found several things going on with me along with the Sjogren’s. Eventually, I had to stop seeing him as I could no longer afford it. If you can afford to see one I highly recommend it. Hoping you feel better soon! Elaine
I'm skeptical if these gurus,alternative docs& meds.$$$ follow the 💰..Desperate people will be preyed upon.I know my mother was,She spent a fortune
1 in 100 young women in the US - including myself - have POTS, a serious illness that causes not enough blood to get to the brain. It takes on average EIGHT YEARS to get a diagnosis, even though there is a simple test for it. It took me TWELVE years and I saw dozens of doctors, some who told me there was nothing wrong with me even though I was SO very sick. To make matters worse, there are only 36 board certified autonomic neurologists in the US - the experts in this condition. If this were something 1 in 100 men got, these stats would not be this bad - it would not take this long for a diagnosis.
Many studies show that doctors take longer to diagnose women and don't take their symptoms or pain as seriously as they do male patients. I'm glad we are talking about it because millions of women like me suffer from under-diagnosed conditions, and doctors are under-educated about illnesses that primarily affect women.
Where did you go? I think I may have that after the birth of my child, my autonomic nervous system has been forever changed. 20 YEARS ago. I'm in Chicago. Thank you!
I know here at the University of Chicago, they do the tilt table test, but how many more tests are needed to confirm??
Funny thing is. POTS is often caused by an infection like Lyme disease... I had Lyme disease. And all the pots symptoms...
I have POTS which is caused by hEDS. I finally got both my diagnoses last year after suffering for 15 years.
@ Kristin Kimberly A tilt table test is the only test I needed to diagnose my POTS. I had to get a referral from a Neurologist to an autonomic specialist.
They also had small fiber nerve biopsies along my left leg and a "sweat test" to test for underlying neuropothies/disautonomia as well. I used live in Chicago, but the only medical professionals that helped me there were a sleep specialist, an acupuncturist and a holistic MD. Good luck!
Literally this EXACT same thing has been happening to me for yeeeeeeears. Minus the epilepsy... Step by step every single thing is the same.... And I stopped trying at fibromyalgia/arthritis when I realized they just don't know and don't care. Glad she was able to find a solution.
So glad you are on meds that help.
Thank you truly for sharing your story. I cannot tell you how much this has helped me, and I’m not special meaning that it most likely affected so many people hearing this in the same way.
so inspiring 🖤 beautiful story
That is why I go to functional medicine doctors now. But it can get so expensive... our medical system is ridiculous
1966 I was born.
1982-1984 tick bite bullseye on right arm.
1980’s many symptoms.
1990’s many symptoms.
2000’s many symptoms.
2013 diagnosis.
2015 treatments.
2016 return of Lyme disease as it attacked my nervous system until my Doctor put me on a natural medicine antibiotic.
The disease eventually gets used to the antibiotics and you have to change treatments. Your battle with Lyme disease is like a boxing match,,, you throw a left hook and Lyme kicks you in the crotch.
Thank you for sharing your story. I heard a similar story from a large animal veterinarian. He had a close female friend who got worse and worse until she was bed ridden and still the doctors said no it was not Lyme disease. The vet became especially interested as he treats Lyme disease in horses. He was very supportive of her. Eventually they diagnosed her with Lyme disease. Don’t know how or if she recovered, but I have not forgotten the story.
I also have had chronic Lyme for 5 years. Thank you for sharing
My story-Stay well-czcams.com/video/wRIWTXZwM10/video.html
Thank you so much,Great Job of Explaining The Truth About Lyme Disease 💚💚💚🇨🇦
Thank you for opening up to us, it’s appreciated. Like you I am suffering lot’s, more as I get older! I’m sick, I hurt 24hrs of everyday. But I’m more sick of these neurologist & specialist, rheumatologist & general GP’s & private doctors telling me how unwell I am............The conclusion is I gave up the fight many years ago for help! After the MRI’s & CT scans & being prodded with needles & blood being taken, we (meaning partner) & I manage our way. We live day by day, it’s the only way! I send gentle hugs 🤗 to all that have invisible illnesses 💛
So much respect for this woman, hats off!
7 miscarriages wow. At least God blesses them with 2 amazing children.
I ve saffered for 4 years of PMDD, till i found a docter how belived me.
Now life is not perfect, but at least good again!
I have PMDD too. Luckily I found a lovely doctor that took my concerns seriously. Hope everything is getting better for you
Am so glad people are awakening to the truth about situations endured by this lady and others. As I wrote before, I endured a misdiagnosis for 60 years so I know the pain she is going through. Just yesterday I had my most recent medical exam. The doctor told me she thought I looked remarkably well for someone my age and with these past misfortunes. I let her know that I am a teetotaler, do not smoke, use drugs or chase after street corner ladies of the night, while I eat well, do a small amount of exercise, and do try to think positively where possible. My deepest hope is that medical science will advance to the point where misdiagnoses are a thing of the past and that we can soon have health care reform for universal health coverage in the USA.
Before the MRI, multiple sclerosis, far more common in women, was called 'hysterical paralysis '. Important to share these experiences
Lyme disease or other kinds of borreliosis and autoimmune diseases are also far more likely to occur in women than in men. That's the most prominent reason why women, more often than men, are treated like psychos by ther doctors. As a man suffering from lyme myself, I can tell you that I too was diagnosed with a psychogenic disease "somatoform disorder" or I was told that "we don't need to do anything - it's normal that you feel pain from time to time" or "maybe it's the stress" or stuff like that.
My point is: I think because it is mostly women who present with such symptoms, medical personal thinks that it has to be something psychological because an infectious disease can't prefer women over men, right? Well, there are various infectious diseases in which men are more likely to die. In Lyme, it would make sense as that way, there would be less men with late stage symptoms given that many died in the fibrile first stage or when it comes as a reactivating co-infection to Influenza or Covid.
So glad you found an answer, Stephanie. I can relate so much to your experience, though my own was not so long. After 8 months of terrible pain, I finally talked a doc into ordering an MRI. Diagnosis = brain tumor #braintumorawareness month #epENDymoma
Yes, a friend lost hearing in one ear, has impaired balance now, fatigues much more easily, has to have 36 Botox injections four times a year... all because her symptoms were ignored and her brain tumor wasn't diagnosed for five years... all it took was one MRI.
@@melinadayoung2953 so sad 😓 MRI'S are so much cheaper than they used to be..maybe this will change.
Jodi Lee praying
I have been misdiagnosed for years and nobody believed me totally understand what she's saying.
I’m a black, plus size, 27 year old who’s a broke college student. I had to take a five year break from my education to have surgery plus recovery and now I’m dealing with a whole new set of problems! I want to earn my doctoral degree in psychology so that I can become a clinical psychologist but I don’t know how I’ll do that dealing with constant pain and fatigue that is untreated! Many doctors, nurses and even pharmacists have treated me like I am only looking for drugs! I’ve even had a pharmacist ask if I forged a prescription “because there are two different black inks” 😑 I’m so glad that she shed light on this situation because it is true! My doctor has even stopped listening to me! I finally got a referral to see a rheumatologist today! I’m just waiting for my insurance to approve it now.
I'm happy for her.My heart feels for her.I understand completely.They did the same thing to me.Test after test.
I love her ending statement, recognizing all the other privliges that helped her when being a woman didn't.
TheAGcollector101 me too
How sad! She had to basically diagnose herself. I hope she gets better for her kid's sake. PEACE! 🌺
Thank you for educating me. I am 74 years old and this information is so important. Bless you for Spreading the Word! X
I have a friend whose story is very similar to hers. She was also told that it was all in her head. She is in her 20's and is permanently disabled. I appreciate Stephanie for sharing her story and increasing awareness.
We have to remember that Doctors are just “Practicing”~
It's not a valid excuse anymore when doctor's altogether dismiss our symptoms and try to give bare minimum care to treat what are usually wrong diagnoses. To blame it solely on weight, mental health and similar issues is balogna. Yes, being a medical practitioner is a 'practice.' However, far too many think they know it all, are dismissive and send you out the door without even trying to do additional research to figure out the root cause of your health problems to solve them instead of masking it with all kinds of medications that may do more harm than good.
Indeed!
I too have a lot of symptoms like yours. I called my Neurologist 3 months ago cuz my my back and legs were getting so fatigued I would end up collapsing on the floor. It was weird, 1 second I'm fine maybe a little pain but the next I'm on the floor just like my muscles were gone. I ended up having to beg him to help me, which he didnt. He refused to see me sooner than my already scheduled appointment and informed me that I am depressed and lazy possitive that has to be what was going on. Well this is still happening at least 2-6 times a day depending on how much I am up. I see him tomorrow and I cant wait to inform him what I think of his phone diagnosis. I just hope I can keep my courage up cuz I usually dont stand up for myself, I'm the quiet one that usually just leaves so...wish me luck..please?
Can you see a different neuro? (Many neuros are terrible and not empathetic whatsoever, though.)
I wanted to follow up and see what happened with your neurologist last year. Did you get a diagnosis? I hope so.
were you ever diagnosed properly? I saw 4 neurologists, which was a waste of time, I was misdiagnosed with MS. I finally saw a LLMD (Lyme literate Dr) and was correctly diagnosed with Lyme and Bartonella. Bartonella can cause what you are describing, fyi.
Thank very much for sharing your story.
I can relate
Thank you so much for your video. I am living in the UK, going through similar things as you went. After a standard blood test came negative,, the first thing that sprang into the doctor's mind was mental illness. Now they tried to diagnose me with ME/CFC. Who cares if I had to stop working, who cares if I have two children to support, who cares if I am in pain.... it is important that NHS saves a few quids that further research would take to diagnose me and get me back to work.
I’ve been diagnosed with Fibromyalgia for several years now. I honestly feel like this might be what is going on with me. I’ve had dozens of tick bites over the years. The symptoms really seem to be in line with Lyme disease. I really think I need to see ANOTHER doctor maybe.
I had Mono then had chronic fatigue, was told it was in my head, 3 years later I was finally diagnosed with MG after being told I had Lyme, Lupus and a couple other things. I nearly died while trying to get my drs to hear me that I was ill, and this was not normal.
It was so nice to have a diagnosis...then you are not fighting an invisible enemy.
Tru Neilson Myasthenia gravis?
@@batshevabecher5848 Yep, they manifest in a very similar way.
Lyme mimics lupus,MS, RA arthritis..they know it's lyme..if it showed up on blood test you need treatment now.Look up book bitten and podcast.Get Elisa,western blot blood test if chronic long term lyme you need a naturalpathic dr.Look up ASYRA techs in your area
You are absolutely right about the healthcare sector. Amazing story. Thank you for sharing.,
Its a blessing having a support system