Early MS Symptoms. First signs of MS. Information you need to know.
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- čas přidán 27. 01. 2023
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Thank you for watching @SaraslivingwithMS. I created this channel for multiple sclerosis awareness and support. In this episode I share my early MS symptoms. Information you need to know to get treatment fast and stop the progression of the disease.
My videos do not provide medical advice and are for informational purposes only. The videos are not a substitute for professional medical advice, diagnosis or treatment. Please do not disregard professional medical advice or delay in seeking it because of something you have read or seen in any of my videos.
![Multiple Sclerosis Diagnostic Criteria [Neurologist Explains]](/img/n.gif)
Don't beat yourself up for not going to the doctor sooner. Odds are they would have blown you off anyway and said you're probably just anxious and need to get more sleep. They won't take you seriously until the effects start becoming severe, especially if you're female.
It took a lot to get a diagnosis! It’s crazy how it can go on for years and years! Trying my best to get more information out there. ❤️
Facts.
True. Most dr visits just leave me with ptsd anxiety and huge bills!
I went to my pcp after 5 months of symptoms & he totally blew me off. Even said he wouldn’t refer me to a neurologist. I took a notebook paper with symptoms I was experiencing and he literally glanced at it and set it down on a table. I picked it up and asked what about these symptoms…
I got nothing. Thankfully things have at least temporarily improved. I relapse sometimes, but nothing as severe as that 5-6 month period.
Yep like me & gave up after finally getting dxed because of our DEA drug laws &, mj that helps me lots! I was labeled as a drug addict & fired by my only group of neurologist in my area after 7 yrs!!!
My wife's right side showed many signs of disability and her neurologist at the time diagnosed a stroke for the first 8 years. After that she had other growing disabilities and after doing a spinal tap in hospital, the white dots confirmed MS. She had it for 26 years and wasn't able to ambulate (stand or walk) for the last 15 years. She had MS 26 years. Long time. I was her carer for almost all that time. She has now passed and was 82. But she is no longer suffering and was a wonderful person.
The effects on me, the carer, for so long was considerable. I had a heart attack (90% blocked) and pneumonia. I have since recovered, walk 11,000 steps and day and keep well. I am starting to do some travel which I have never been able to do. All the best. One day hopefully they will find a cure.
Bless you 🤍
I don't personally have MS, but my mum did... She passed exactly 4 months today.
She told me she had first had symptoms of MS that started with what she called an " MS hug" which she initially though was a heart attack, this happened when I was around a year old. ( I'm 30) This was her first thing that anything was wrong, otherwise she was very healthy, no high BP, no other conditions. By this time she had had 4 children, i was her youngest and I watched it progress as I grew up. She started having issues with walking.. her mobility got less and less, I remember she fell out of the car when i was about 12, because she couldn't feel her leg and it was caught somehow around the seat belt that had dropped too low and the sil of the car door( inside)...
After that her walking got progressively worse. we moved house not long after, because they wanted a house that had a downstairs bedroom as mum by this point was using a stair-lift and couldn't always stand up once she got to the top.
We moved into the new place in around 2007/08 we moved to the new house.. Mum had secondary progressive MS, that she was diagnosed with just before we moved. It took that long for a diagnosis... she was put onto tablets and also injections into the stomach/legs - I used to do them for her every so often. eventually she was struggling to walk so bad, that she would fall almost daily. she couldn't pick her feet up, nor feel where they were. She had a very big fall in the bedroom one night where the carpet was reeved up, she caught it and smashed her self into the floor... even as recently as January 2023 , those bruises never fully went. She had many occasions where she fell off/down the side of the toilet. Ambulances were called quite often but mum used to refuse help for what was happening, until Xmas of 2021 - right though the middle of Covid, mum got very ill, we assumed it was an infection as those always made her unwell. She was unable to get up and barely speak - because she kept refusing for my dad to call an ambulance.
That night she was so unwell he told her she was so unwell and she had no choice in the matter, dispite her arguments, Dad called for an ambulance - She was taken into hospital, where it was discovered over the course of 6 and half weeks, she had Sepsis and MRSA. She was incredibly ill and we were told to expect the worst. amazingly, my mum recovered, very well... but not fully.
This had meant she had so much muscle wastage and now she was unable to sit up by herself- down to MS and being in hospital for so long... her MS was severely affecting her memory and sometimes she come across almost, childlike - with no understanding of consequence and what she said. We knew it affected her mentally so we knew she didn't mean what she was saying, but now, She was 100% bed bound. We had a hospital bed put in, my brother and dad became her full time carers around the carers in 4x a day. She went on like this for 2 years, she even caught covid - after she left hospital. she had it for 4 days and it went...
Late January of this year, she showed the same very strange behaviors...confused, unwell.. arguing with dad about being ill/going to hospital.
This time was different, She went in - we believed it was an infection, again. but we caught it quite early.
She went in... It went from infection, to blood clots in the heart and lungs, to seizures caused by the MS - severe flinching and jumping, to sepsis... to organ failure and she passed 4 days later. She was still mentally there... but she could barely lift her arms now...her heart rate had gone to 200 bpm trying to fight infection, fight the failing kidneys, the heart was giving up but trying so hard. my mum had such an insane amount of water retention, they had to stop giving her fluids because she bloated so badly.... i got her to squeeze my hand three times for I love you... that evening was the last I saw her...
My mum didn't die from the MS... she died from complications of her MS - so if you take anything away from this....Please get checked out as early as possible. My mum was kind soul and a good woman... she raised 3 kids by herself and then raised me with my dad... we had dogs and they taught me well.
I'm aware you can't stop or cure MS, but you can catch it early and slow it down...
Thank you so much for sharing your Moms story. ❤️❤️ I hope anyone reading this with any type of MS symptom will get it checked out. That’s heartbreaking. I wondering how she would of managed if she was diagnosed earlier. It reminds me of myself how I hate all the attention and being taken care of and don’t want to go to the doctor. I will definitely learn from this. Luckily I was diagnosed sooner than your Mom, but later than I would of hoped. I will listen better when my husband tells me to go to the doctor and keep my appointments. I have found a new neurologist recently and they want all sorts of new tests and my first instinct is to say no or cancel, but I won’t. I will follow through. I recently had seizures. Did your Mom have them the whole time or was that later? Do you know if it was from MS or the medication? Thank you so much for sharing this. I really really appreciate this so much and hope others will learn from this.
@@SaraslivingwithMS I did send a big reply from my phone, but i think it went into the abyss.. so if I can'y find it, I'll reply again later with it :)
@@SaraslivingwithMS I'm hoping this reply goes through as this will be another long response.
So the seizures right before she passed were actually caused by MS.. When she went in, she had a small amount where she would flinch, but nothing crazy and some days would be worse than others but it all depended on the day. the 2nd day she was in, dad and I walked in to doctors and nurses surrounding her and her begging for it to stop... we couldn't see for a few mins, but this went on for nearly 45 mins of a full blown body seizure, This was the MS getting severely worse. her whole body was shaking aggressively and she was aware throughout the whole thing... when dad and I got to see her, she told us how tired she was and that she never wanted that to happen again.... thankfully, it never did. but it was horrible to witness and i imagine horrible more than i could think for my mum too.
After this they did extra brain scans and checked for brain damage. nothing was found, but after that mum's whole body jolted every 20 seconds or so. her head jumped off the pillow and knocked her face mask off... so i would stand by her and hold it so she was comfortable.
At least, the most she could be.
I can't remember if I mentioned this in the previous message as my phone deleted it and never sent the reply i did to you.
But my mum was struggling so much that they took her off the fluid drip, she was retaining much more than her body could get back out again and even after that, she continued to gain water retention.
I was born with 3 heart conditions and also have a pacemaker, I am 100% paced and I fully understand hating the drs/hospitals/appointments... but I know that if I want to be safe with my heart, I need to keep those appointments, the horrible CT with the stuff they put in your arm.... makes you feel like you're going to pee and pass out in one go... or the ultrasounds that hurt because they push so hard into my chest. I do understand the fear of being diagnosed with another thing on top of it all, but, if not caught... it may only ever get worse. I hope your future appointments go well and you stay well in yourself :) If i've missed anything, or anyone has questions. feel free to message me..
Hayles
Has anyone seen the CZcams Drs video about MS being related to Epstein Barr virus (sort of like Shingles is related to chicken pox). Very well done study where not everyone that had EB had MS but everyone that had MS had EB. Conclusion was-we need a REAL vaccine for Epstein Barr virus...
My heart goes out to you in the loss of your Mum. ❤
❤❤❤ For all the people who suffer a disease.
I got diagnosed 2 days ago. My symptoms were my hand and legs numb, tingling. My headaches also. And i lost the ability to write. My arm hurt my legs also. Strange symptoms that i was even told to go see a psychiatrist as i was told i was just stressed. After 10 years of suffering i finally got the right diagnosis.
Jesus I literally have every single symptom you have. I was told I don’t have MS several years ago (after a brain MRI) but I’ve gotten worse so coincidentally I’m going tomorrow for a full brain and spine scan. Thank you for posting this.
Just to clarify I have an immune disease called MCAS that can mimic MS and I also have brain/CNS damage from being exposed to chemicals in the military so it’s quite complex. However I still push through and exercise every single day and I find resistance training (weights now mainly, I started with bands) has made life much more tolerable. Thank you for posting and look after yourself 🙏
Thank you. Hope your appointment goes well. I do have additional shoes out there if it helps ❤️. I have seizures and two types of cancer.
At the age of 43 I was diagnosed with multiple sclerosis March 22nd of this year. I am at the peak of my career started a new job and this happened😢 I'm gonna fight this disease as much as I can because I don't want to took bring me down I have so much to live for and I have so much to do for this world that God has gave me a platform and I want to continue to live my life took a fullest.
Yes! You got this, it’s just a bump in the road.
@@SaraslivingwithMS Thank you so much!
I believe the rollout is now linked with MS and that's from the corrupt WHO themselves
hello, I would not settle with the diagnosis. See my recent comment - there are so many wrong diagnosis (and so many possible causes for the inflammation. You might want to look into coimbra protocol, if you do not find the trigger cause. simple D3 (high dose), that helped so many to go into remission.
(but first/ look for the real cause - many bacteria, viruses and even parasites are possible triggers. Get rid of them and symptoms go away)
I can only say, I was diagnosed almost 10 years ago after an initial, nasty flare-up, by MRI and lumbar puncture, and I've been on Tecfidera as a daily medication (2 capsules per day) since then. I'm self employed and I still work full-time. I've had not a single flare-up in 9 years although the neurologist's initial prediction was that I would probably be a bad outcome because of it starting so nastily. But here I am, so far not disabled at all except for a slightly off sensation in my finger tips, and subtly tingeling nerves when exercising. What I want to say is, You may still have your career and everything else you wish for, and just take life day by day and take care of yourself and the rest is pure luck.
Thank you for letting everyone know your story.
I'm almost 64 and have been dealing with many different symptoms you listed that started at about 19 with the blind spot in my left eye. I went in right away, my sister even had me see her eye doctor, same thing. They said a capillary lost blood flow and it died and that with time I wouldn't notice.
It seemed like an isolated incident, then years later I had bells palsy when I was admitting my husband into the hospital. The ER said yes you have Bell's palsy but gave me no steroids.
I was diagnosed with shingles because I had a n itchy rash without pain, that developed into a numb spot on my back that sometimes tingles and itches.
I finally have a doctor that is ordering an MRI of my brain.
I'm going to be shocked if I don't have it. So many years of pain and being treated like a drug seeking addict,all the while working.
I pray for us all
I am so sorry to hear this! Yes it is so frustrating how long it can take for a diagnosis. I want to get the information out there there is a lot of people that go undiagnosed for years! I often wonder why my leg would be like if I would of been diagnosed earlier
How did your MRI go?
I was diagnosed with ms 22 years ago when I was 56 ,my symptoms were different to yours, I felt as if I had cotton wool in my shoes, also found it hard to walk in a straight line ,l also had a few falls and my legs felt like jelly. Although I am now 79 I haven’t given in to it. I played bowls up till last year, I still play croquet, and go to art classes twice a week. Still manage to garden though kneeling is very painful. I decided not to take much medication because it always made things worse, I take painkillers also amitriptyline at night. I do have a mobility scooter because I cannot walk far and it gives me some independence. Try not to let ms take over your life ,just try to carry on for as long as you can . I refuse to let it beat me.
That is such good advice!! Thank you so much. It gives me so much hope to hear you say that. Thank you ❤️
I began getting sick in 2014. Absolutely exhausted, bronchitis constantly, and over all super anxious all the time. Went to doctors immediately. Went through 5. Put me on depression meds which I didn't need. Said I was dramatic ( I'm not) , looking for attention, and an addict...?addiction...?? An addict? 2015 - 2021 I saw many doctors for leg & foot pain, headaches, not being able to walk right, always being tired, among other things. Started falling summer of 2021. Mri showed ms. I had already had 2 of those. Why didn't someone see it? Now I've done 2 different meds. Failed both. Tried stem cell therapy. Worked alittle at 1st. I am worse now then I was. Doctors don't want me. It's frustrating.
Wow that is frustrating. When you had the first two MRIs did they do your spine as well? I had full brain and spine with and without contrast when I finally got the diagnosis. It’s amazing to me how doctors will not listen, so frustrating! What medications have your tried? I have tried three. Right now on Tysabri.
@@SaraslivingwithMS I Forget the name of the 1st one. Was generic and started with a d. I was so so sick. Then I noticed my heart rate went sky high and my blood pressure would get super high after a dose. I called Ms doctor and was told that is not a side effect. That I was causing it because of my anxiety. I went to my primary doctor and she wanted me on blood pressure meds. I said how about I stop the ms meds. Then I was on vurmerity. After 9 months it did nothing. But it didn't cause a bad reaction so stayed on it. Then I decided stem cell treatment. I have changed my diet, done so many supplements, acupuncture, chiropractor, and exercises. Nothing works. Just keep getting worse.
@@staceyann7539 wow you have been through a lot! Have you tried getting a second opinion? I have seen a lot of numerologists and finally paid out of pocket to see a neurologist that specializes in MS only. Wow what a difference it was I see then once a year and they listen and are really helpful.
@@SaraslivingwithMS I have not. I'm getting desperate enough now that my dislike of doctors might have to take a back seat
I was seeing the ms clinic in Denver. Suppose to be 1 of the best in the country. Where would I go from there??
Thanks for sharing your experience. I started this journey in the 1990s. Like you I didn’t go to the doctor right away. But when I went they didn’t believe what I was saying. This went on for years. I went to many doctors. With No answers. Finally in 2003. I went to a doctor that knew about MS. I sent him all my records before I saw him. Within twenty minutes he told me what I was experiencing was real. And It was MS. I just wanted to know what was happening to me. And it wasn’t in my head. It’s been years now.and I have to say. I have had good days and bad ones. But I can deal with it all. I try to get a lot of rest. Eat healthy foods. And stay away from alcohol. My journey was so hard before I saw my MS doctor. Now just knowing was my saving grace.
I am 99% certain i have MS. I have been telling my Dr for years about different strange things going on. Mostly the extreme fatigue and aches and pains, brain fog, Depression and Anxiety. The past few weeks it has all come to a head, it's the worst episode I've had and there have been so many more symptoms too. I had a lightbulb go off this week... My Grandfather had MS. That is what it is!
my Dr has sent me for blood work but I will be asking for an MRI when I go back to her this week. "Episodes" where I feel like I have the flu, my whole body aches, and I can't figure out how to even get up, I'm confused, I cry over everything, my eyes go blurry, I don't feel like me, I can't figure out how to make a coffee, I can't stand loud noises, I get drowsy, I can't think of the right words when I'm talking. Stress often seems to trigger it. I don't know if that's possible.
Thank you so much for this awareness.
Thank you for sharing. Blessings and healing your way.
I had many of your symptoms, and more. My right leg was paralyzed for a couple of months, then came out of it. Have lesions on brain scan, have the same sense when walking, that my legs will just give out and I won’t make it back. Have incredible sensitivity to heat. They finally figured out my illness is late stage Lyme disease, I’ve had it 34 years now.
Thank you For being so brave and sharing your story.
Thank you for making these videos, sharing your story, and helping others with your experience and compassion.
Thank you for your support!!
Your story is almost exactly like my own. I also waited to go to the doctor. You are not my alone.
My auntie had ms such a cruel disease and it’s so hard to get doctors to listen sometimes fobbed off so many times ! I’m sending massive positivity and lots of good energy your way and wish you lots of love on your journey ❤
Thank you so much ❤️❤️
Sara, thank you for sharing. I was diagnosed in 2013 with MS. My optic nerve was hit as well as my right leg. Relapses are no fun. Keep hanging in there and continue to move as you can. I will watch more of your videos and see how you are doing.
Thank you so much. If you have watched my recent videos you will see I have had some complications, but still hanging in there! Thank you for the support!
Thanks for sharing! This is exactly how things started with me also minus the vision issue. In the process of getting a diagnosis..
I hope you get answers. Have you had an mri? I had one of both my brain and spine. I have lesions in both.
Thank you for sharing. This is very inspirational!
Thank you for watching!
Thank you for sharing, Sara. This is very helpful.
Glad it was helpful!
Thanks for sharing your story ❤
Thank you for sharing, I am newly diagnosed 2 weeks now. My symptoms are eye double vision causing me to walk very unsteady, I started with these leg sparms 4 weeks ago, pushing my feet so I would have to walk on sides, until it would release. It's been a very scary, overwhelming and information 2 weeks in hospital and 67 tests to determine for sure. I've been referred to Penn Medicine in Phila that has a whole team that handles ms only, so all modalities same spot. The double vision is slow to clear, and my job let me go because of diagnose, but stated they would hire me back after I get issues in hand. But your honesty and positive thinking, I subscribed to your channel, just for some good information or a positive note on a bad day. Thank you again
I am so sorry to hear you got let go and had to go through 67 tests! I am so happy to hear my channel has helped you, that is exactly what I want to do. Know that you are not alone! It sounds like you have a good medical team to help you, that is great, it can be so hard to find a good doctor for MS. Thank you for subscribing and please let me know if there is anything you ever want me to cover or talk about.
Hope this info is picked up by many people. Very helpful info and brave for you to share
I hope so too! Thank you for the support
I just got told by a neurologist at the ER that I most likely have MS. Meeting with him in a few weeks to go over my MRI results. Everything that you explained today made just as much sense as the doctor. Thank you for sharing about this! So much to research now, it all makes sense!
You are so sweet and heartfelt. Thank you for doing this for others. Sending you blessings.
Thank you so much!!
just so you know, it took me just shy of a year to get diagnosed, 4 months before i even managed to get an mri scan... they (physio) were convinced i just had a trapped nerve, bad cramp or just making it up. so really it doesnt matter if you go earlier the early symptoms dont get treated seariously and waved off... even my numb/stiff neck and right arm/hand wasnt enough.
I have Long Covid and many of the symptoms are 100% like those of MS.
Sorry to hear that!
Yeah it’s like this
very helpful; thank you
You're doing great work. I've no doubt you will help many people, suffering in silence. Thank you ❤
I started getting symptoms in 2001 when I was 37. It started when my right hand felt kind of numb and I kept shaking it to wake it up. I also felt lightheaded like I was drunk. It lasted for about a month. Then my right foot went kind of numb. I was never diagnosed until I was 53 when I had a brain MRI for a different condition. I've developed other symptoms over the years but I'm doing really well. I've had problems with being tired ever since I was 13 when I had Mononucleosis. I'm 59 now.
I am so glad to hear you are doing well!!
I had MS for 13 years before I was diagnosed, after terrible double vision. In 2017, I went overseas to get an experimental treatment called HSCT for MS. It was truly life-changing. I haven't had a flare up since the procedure! Selma Blair had the same treatment. It is available here in the U.S., but I believe it's still difficult to get insurance to cover it. It doesn't normally repair damage that's already been done, but if any on your symptoms are due to inflammation, you can see improvement. It is anywhere from 70% - 90% effective at stopping the progression.
I know right? She's back to normal. 4 years ago she had bad MS and now she can talk and everything it's insane what our bodies can do to us. I had hives for two days never had hives. I'm still feeling kind of sick but the hives eventually went away. Oddly enough I was watching Hell Raiser when I noticed they were going away. .I don't know what stopped them and I'm assuming the county worker prayed for me so that could have done it but they are gone. I watch Touched by An Angel every once in a while though lol so maybe I'm just assuming the guy was an angel. He's like "I'm gonna send you the book of John." lol
@@mariahconklin4150 MS is a progressive neurological disease. Symptoms increase over time and lead to greater disability as you age. HSCT does not promise elimination of symptoms, only to stop the progression. There is no other treatment that claims to do even that. Hopefully, Selma's progression has stopped. The treatment is chemotherapy, not exactly prayer or angel dust. It is believed that MS is caused by a defective immune system. The chemotherapy destroys your defective immune system, which is replaced by a new immune system grown by stem cells harvested from your bloodstream before chemotherapy.
What is HSCT ? My 41 yr old daughter was just diagnosed with MS this year 😢😢😢😢😢😢😢😢
Where did you go overseas
I had the procedure at Artemis Hospital in New Delhi, India. The team that performed the procedure is no longer there, and I don't know if they still perform it. They had some problems early on (2 deaths), but any issues they had with cleanliness were corrected before my visit. @@RobdeKlerk-qg6lc
Thank you. I have been suffering with many of the symptoms you mention for some time. I appreciate your video very much😊
I do have another video on additional symptoms that can happen.
I have ms, my first sign was an electric paralyzing shock through my face! It was a school lock in function.... i couldnt talk or anything my tongue wouldnt move all i could do it cry! Then at age 23 i was diagnosed once with it.... then had to fight to get drs to believe it was and do all their testing which all proved the same thing! I was orginally diagnosed by a stabbing eye pain felt like a needle being inserted into my eye repeatedly, so i left work and went to er, where they did an mri and found it! Then ive had to go to many doctors and fight with them about it.... in the end none of their meds work as im allegic to them or they set off the ms so my suggestions are eat as clean whole food and minimunly processed as possible and to stay close to the Lord and remember it is when you are weak HE IS STRONG! He can make this body work as HE needs it to, and gives me comfort and peace while im struggling and laughter to laugh at the dumb things my body does! And the peace that passes all understanding.
Did those symptoms go away? Are you living completely medication free? Have you had any walking or other mobility issues?
I still have relapses not as often, but damage already done but i also have celiac disease and due to that diet most of imflamation is gone, i still have flare ups last one (beginning of this year around march april) was about 2 weeks of a knife going through my head and ear was throbbing with it. Hard to think with that pain! In past ive had to drag my leg because it decided it didnt need to work lol,gotta laugh or this stuff will make you cry! Ive had to walk with bent legs before..... ive had arms and legs go numb... random sharp shooting pains, balance issues, fatigue, brain fog, hands like to let go of things (i call it my 52 pick up instead of cards its random things🤣😂 i play hide and seek by myself all the time not by choice but because i put something down and cant find it🤣)! Meds almost took my mobility i have gotten a lot back but everyday is like most you never know what your going to get.... i have lesions all over brain c-spine and thorasic spine (not sure about lumbar im sure i do but good ol drs didnt think that was important)! Im stubborn so that is helpful i dont care how many times i drop it i will pick it back up, i also use mind over matter if i dont mind it doesnt matter! Ive been living with it most of my life so to me its normal i guess! Ps i also have cold sensitive ms not heat sensitive, mine acts up during the winter and locks my body up when its cold! I do take vitamin suppliments from shacklee, but not perscription meds. I just want to encourage all who go through this you are a warrior and dont ever let anyone tell you any different! To battle each and every day with this is like a battlefield some days we win some and some days we loose some keep on fighting do not give in and do not give an inch! I know its hard you are not alone but we cant give up or this disease wins! I dont know of anyone else but this disease attacks my hunger and it makes me not be able to eat like the signal from stomach to brain are not connected and when i do get hungry eat right away or in a few min it is gone! I keep fighting though until my last breath! Im praying for all🙏
@@lilbitme2246 thank you so much for the positive message!! Gives us all hope that we are not alone ❤️❤️ I also have cold sensitivity. My leg completely locks up!! I am also realizing I have heat sensitivity too, but not as bad and only if I get really hot. You are truly inspiring. Thank you so much for your kind and supportive message!!
I am praying for you! I think I may have early symptoms! I’m having the blind spots in one eye now. ❤️
My sister has MS and all of these symptoms in hinsight are red flags, it angers me that doctors don't put them all together. 7 years from her first symptoms before they figured it out 😡 but you have to push for the right tests 🙏
Thanks for heads up of early signs.
I have reason to worry.
I hope everything is ok
I haven't been diagnosed with MS yet, however your mention of neck pain stood out to me. Mine started about 4 years ago. I noticed looking down would cause a severe pain that radiated up to the back of my head, I would have to look straight up for relief. I'm going to see my doctor next week. Hope you are feeling better now.❤
Good luck to you. It might not be MS. I had many symptoms. Anything I can do to help. Please let me know.
thank you for this
Anyone having a hard time finding a Dr who will take them seriously should consider finding a Functional MD. They have a website where you can search for a Dr near you. They are generally much better informed and better at getting to the root cause of illnesses. They also spend a lot more time with you and run tests that standard Drs don’t. Being really sick and seeing one useless Dr after another is just awful. I don’t have MS but I have other problems which were causing extremely severe migraines leaving me bedridden for days on end. In my case a major contributing factor was sky high chemical toxicities and mycotoxins. Standard MDs never even thought to run those tests, they just wanted to medicate my symptoms with drugs. Detoxing the chemicals from my body with glutathione IVs has improved the migraines tremendously. (Anyone with chronic illness usually has very depleted glutathione)
It’s heartbreaking to see SO many people suffering with so many serious chronic illnesses these days. We really need to start looking at the environmental factors which are contributing to so much illness. I remember when cancer was much more rare, now everyone has it. It’s not normal.
It’s amazing the difference a good doctor can make!!
Thank you for sharing
Thanks for watching!
Thank you for the information and sharing your life with us
I was just diagnosed with MS at 49 yrs old. What a trip. I cant believe that this is my life now. I know I have no way to change it but I got myself on the Wahls diet and it has been wonderful. I have lost a ton of weight which is the upside I guess. Right now I have drop foot which is causing the most immobility. You are in my prayers 🙏 Don't stop fighting, much love to you and success
Thank you! It is crazy getting that diagnosis isn’t it? I wish you well. Thank you for the support!! I did try Whals, Swank and OMS. I am glad to hear it is going well for you
Hopefully the remyeliation treatment will come soon 😭😭🙏
Thanks for the information. I've been recently diagnosed with Lupus and now my primary thinks I may have MS. She noticed a tremor in my hands. I realized something was wrong with my bladder last summer when I had to rush to the restroom to keep from urinating on myself. Then extreme muscle fatigue (worse than my lupus fatigue) to the point where my doctor admitted me to the hospital because she thought I had a stroke. Recently my new symptoms are extreme vertigo and dizziness. I feel like I'm in a water bed or on a boat rocking back and forth all day and I feel like my body is being pulled to the left side. My gait is off and I'm having a hard time walking. I've was at the hospital for two weeks with my husband and I kept dropping things. When woke up a few times and I couldn't focus my eyes to see anything and it lasted for several minutes. For years I've dealt with body aches and pains and numbness in my extremities. If I turn my head too far left or too far right I feel like I'm going to pass out. I've had lupus symptoms for years but these things I'm feeling are different for me and I'm terrified because I'm also having cognitive issues where it's getting hard for me to read, write, type and spell simple words. My husband and I were talking about something unrelated to food and I went to Google to search and for some reason I ended up typing banana into the search bar! I have no idea where that came from. We kind of laughed it off but now it's happening more frequently to the point that sometimes I can't remember our kids names. I'm having a difficult time remembering simple and important things and I struggle to find words when I'm speaking. I don't know if this is MS, parkinson's, or something else I'm not aware of. I just know something is wrong with my body I really want to know what's going on. I'm still waiting on my neurology and rheumatology appointments. Do you have any of the these symptoms I've named? How long did it take you to get an official diagnosis? (Please excuse any grammatical errors. I reread this about 20 times and it looks right to me but I'm not sure) 😔 TIA
I am really sorry to hear this. You have been going through a lot! I did forget to mention a couple of early symptoms which were double vision and and focusing. Also my hands would be really cold. They both went away so I forgot all about it until I read your comment. I am glad you have an appointment with a neurologist, because you should get some answers pretty quick after that. It took me a long time to get to this point, but once I did, it was a quick diagnosis after that. They did a full brain and spine MRI with and without contrast and it was filled with lesions. Most people also get a spinal tap. I hope your appointments go well and you get some answers. sounds like you have a supportive husband, bring him with to your appointments, maybe make a list of questions. Btw I didn’t notice any grammatical errors. 😊
@@SaraslivingwithMS Thanks for responding! I'm praying that it doesn't take as long as my lupus diagnosis. I had an MRI a few months ago and they said it was clear. The neurologist that saw me literally walked into the room and said "your case is too complicated for me" 😳 but hey I respect his honesty lol. Hopefully I'll get a competent doctor this time around.
I wonder if the supplements most of us take on a daily basis aren't wreaking havoc healthwise.
If one has been taking supplements for a long time (including all the oils such as cod liver oil or large doses of olive oil), perhaps it's a good idea to wean oneself off for a while to give the body a rest from supplements and also to see what, if anything, happens.
@@SapphireLyric oh wow lol. I hope he had a recommendation for a better one then!! I hope this goes better this time as well!! Did you get a spine MRI as well?
@@macclift9956 I think for all or almost all autoimmune disorders omega 3 and good fats like olive oil are highly recommended in fact needed to help regeneration of myelin.
I was diagnosed with Fibromyalgia from Rheumatoid but when I went to Neurologist he did MRIs of brain and whole spine. I have some dots in the white matter and unexplained lesions all over my cervical and some on top of thoracic. I’m in pain daily. No day is the same . What sets off pain is stress but then unknown causes. I hope your journey gets better. Praying and thank you for sharing your story.
Have they ruled out MS?
@@SaraslivingwithMS The Neurologist said He doesn’t think I have MS. But I think I need a second opinion. He just referred me to Rheumatologist who diagnosed me with Fibromyalgia.
Yes get a second opinion. Good. It’s the best thing I have done is to switch neurologists
Perhaps you could ask your doctor whether the white dots could be Tarlov Cyst disease, it is apparently rare. I have a large Tarlov Cyst on my coccyx and affects me at various times with extreme pain and I can hardly walk. My youngest sister has MS though, which is how I came across this channel.
Same that’s what they told me that I have fibromyalgia but now I’m thinking it could be ms
Thank you for your video. Insightful. I was diagnosed with MS Feb 22. I have a permanently blurry eye as if looking through frosted glass. Glad the other still works well. I am often fatigued for no apparent reason. Balance is poor which has basically put an end to my road cycling hobby. Most of the time I feel normal enough but I do feel a little worried in what the future holds for me. I fear being immobilised and a burden on my wife and family. Who knows when where or if ya know
Does it make a big difference getting diagnosed early ?
Thank you Sara. Now I know 👍🏽❤️❤️❤️❤️
Omg 😢you are speaking on all my symptoms minus the eye symptom I’m only 35 and I’m 9 months pregnant . I got a referral at 6 months to see a neurologist I’m afraid to go.
I am sorry to hear that. Do you have walking issues as well? Did you symptoms start before you were pregnant? There are some things that mimic MS. Don’t be scared, even if it’s MS, treatment is improving and new treatments are being developed. Good luck to you! Congratulations on the pregnancy 😊
Thankyou for your story.
Thanks for listening
My mother had MS and it took YEARS to diagnose correctly. She started with saying one side of her face felt numb. But she had full movement, etc. She then said her vision felt like "there was a veil over her eyes." We noticed over time her gait was unusual - I would say stiff. She saw doctor after doctor with no solution. The final answer came with her developing trigeminal neuralgia and being hospitalized. An MRI was done with the white lesion changes. I think today she would have been diagnosed much sooner. Would have loved to see if she could have been helped by the newer drug therapies. She just had a downward progression and broke my heart. Best to YOU.
I wish she would of been diagnosed sooner too. Thank you for sharing her story!! MS diagnosis and research has come a long way, but more needs to be done!
Thanks for sharing. I got transverse myelitis back in 2013 which is very similar and sometimes a precursor to MS. Mine came on suddenly within a few hours I was completely paralyzed from the neck down. I got a lot but not all movement back and can walk but have no sensation below the level of injury. It's definitely a wild ride!
Wow! Glad you got some functionality back!! I have not heard of that. Do you take medication?
Very helpful story TY ❤
I recently saw my doctor because of having issues remembering things, forgetting words mid sentence, and feeling like I can’t concentrate. After some testing she diagnosed me with ADHD. But I don’t think that’s it. I was diagnosed with fibromyalgia years ago, I get intense pain all over. A lot in my back. My ankle often hurts very bad and that makes walking difficult. Every night while I’m sleeping I awaken to my arms being numb and tingling. Now that’s happening during the day as well, just completely random. My legs will fall asleep too when I sit in certain chairs. I got really dizzy in the store a few months ago and had to sit on the floor until it passed. I have bouts of stomach issues almost daily. I’m completely exhausted no matter how much sleep I get. I also suffer with depression. It’s like everything is starting to make sense. I’m going to call my doctor tomorrow.
I am so glad to hear you are calling a doctor. If you write everything down and then have that list ready when you are talking about, it helps. I forget sometimes all the many little things that have happened, but they add up. I hope it works out for you ❤️
Hi Sarah. Thanks for sharing your story. MS especially in young people is the hardest to diagnose in this country because it takes so much for them to finally do an MRI and look deeper into the issue. Have you heard of Dr. Terry Wahls and her protocol?
I went to the doc with all little symptoms , they just brushed it off as stress, or I was crazy…took 2 years to get proper diagnosis as they had to rule everything out, was very frustrating
Yes it is a frustrating process for sure! I never thought my symptoms were MS and saw different doctors and physical therapists and they didn’t know either.
Thank you.
Omg that is so weird! I had hives and after I talked to a county worker they hives went away. He's a Christian or angel or something because hives just don't go away like that they take weeks to go away supposedly. After that conversation I felt somewhat better and took a shower so they could have went away because of that. I'm still itching only difference is that when I itch myself the hives don't come back. I'm not religious but was born and raised Christian and still believe in God but I even thought I had MS when I was getting those Hives. Glad I know what to look out for. I was even getting blurry eyes and feeling sick. Now I'm feeling a lot better and getting my energy back. Thanks for sharing though my cousin has MS.
Thank you for sharing. I had Tingly hands and feet for over a year before they figured it out. Peripheral Neuropathy and/or diabetes seem to mimic MS to me. When in doubt, get an MRI!
Yes agree!
As I read, it seems, to me, that diabetes is connected w ms. Something w body not producing insulin. Possible body not making B5
diagnosed 4 months ago and you are so on point if you think something is wrong go in! I was in the service for 11 years mostly worked in medical and I waited way to long to go in. I lost 30 percent of my vision and I can't stand or walk for more than 10 mins at my age(36) I should be running marathons not fighting to get up the stairs MS is rough I hope you have started treatments!
I am so sorry to hear this. I hope you have a great MS doctor. That will make it so much better. Not sure if you have seen my other videos, but I do talk about the other medications I have tried for it and the cancer I have now.
i wish you the best i started kesemipta and after my first 7 shots so far my initial leisons have subsided but my brain is still creating them so overall a positive. still have vision and balance issues but again most of the MS meds are to slow it down not cure it
@@SaraslivingwithMS
Thank you for making this page. I believe by everyone sharing we can understand what the f is causing this MS. My sister has MS. Over 40 years ago it seemed to appear after she had a burst appendix Right now she's smoking pot, says it helps her.
Right?!? It seems everyone is getting MS, Graves, Guillaine Barre…. And seriously every autoimmune disease .
It’s too much… what is in our environment that is interacting with our genetics like this?
Thank you for the comment. Does your sister take any medication besides smoking pot? Does it help her symptoms?
I pray you and all of us get better.
I had a weird incident thrnother morning when my arm was numb I reached for a door knob and missed it- like reaching into thin air.
Then did it again and again.
In a few more seconds I gained my feeling and could grab the knob
It’s just weird
All the neural connections seem off and you don’t really know if it’s b 12, something metabolic, compensation for an injury, muscle weakness due to lack of use or anything.
For years, fatigue, sometimes ready to drop others times able to run like no tomorrow… I hope we all get the help we need
Yes. Thank you. I haven’t had that exact symptoms, but I would have my arm feel like it “fell asleep” and then be all pins and needles and it would just happen sometimes out of nowhere
Thank you so much for this video
So nice of you
My daughter was diagnosed with ms this year , she is 41 and she had some of the symptoms you just said 😢
Your beginning sounds so familiar to mine it's eerie!
Really? Interesting! How long have you been diagnosed?
I’d like to thank you for having the courage to speak about your disease/disorder and all of the associated symptoms. I am experiencing many of the same symptoms that you are at this present time, although I was also station at Camp, Lejeune, North Carolina, and exposed to the contaminated drinking water. So neurological/neuromuscular disorders have been associated with exposure to the contaminated, drinking water, and I am currently in the process of locating a provider to undergo a rigorous, detailed, and extremely thorough evaluation to make a determination, or hopefully a diagnosis as to what may be going on with my present situation.
I thank you for having the courage to one, Produce a CZcams channel and discussing your journey with your disease. You provide individuals such as myself with the courage to move forward in seeking help, guidance, and the diagnosis and the evaluate any and all treatment options that are available. Thank you for your story. Sincerely, Pete Ranjo 3:56 3:56
Because of your exposure to contaminants, I suggest that you look for a doctor who works with the Functional Medicine approach, like Dr. Mark Hyman. May you find sound advice and help 🙏
Thank you for the comments!! I am not sure if you have seen my last video. I have been through a lot and haven’t had a chance to read and respond to everything. I hope everything goes well for you sorry for the delay.
I've seen people using the carnivore diet for MS. Wishing you the best and thank you for sharing!
How do you feel about it?
I'd do fasting and carnivore if I was diagnosed with ms. 💚
I have my spine mri with an MS specialist in 5 days. I had a brain mri in November after some “nervous system storm” I had in October. The mri came back “fine” apparently which I find hard to believe considering the symptoms I was having. I haven’t gotten a second opinion on it yet.
Mine started with stiffening of my neck muscles in the morning that would get better through the day until one day I woke up and couldn’t move it at all and it hurt. Anytime I’d try to turn my head or bend it, I’d start violently shaking. That particular morning I had a horrific headache, the pressure in my eyes was so bad, my vision was blurring. My eye doctor diagnosed me with optic neuritis 7 years ago so I figured I need to go see her again.
I called their office and noticed while I was speaking that I was stuttering and talking at a weird pace. I’d also had a tingling/pins and needles in my back and in my face. This all was happening very quickly. That’s when I called my husband to come take me to the doctor because I couldn’t turn my head to drive and my vision was questionable.
By the time we got to the clinic I had a tremor in my right arm. I went to sign in at the check in desk. I said Hi to the lady as usual, grabbed the pen to fill out my form, and as I’m trying to read the questions, I realized I couldn’t. I didn’t understand anything I was reading. It could’ve been in Russian. I looked up at her and she looked at me and I said “I’m having trouble understanding” She asked what my birthday was and I just looked at her stunned because I literally could not remember my own birthday!! It was a nightmare!
They called an ambulance but our local hospital is incompetent. All they were focusing on was my neck pain. They did a CT of my neck and said it was fine and sent me home! My husband had to hold me up because I was wobbling. These symptoms actually progressed over the next week and took about 4-6 weeks to level out. The the speech and muscle tremor/weakness seemed to take the longest to go away.
A couple months later I looked back at my chart and they never wrote anything about my memory or nerve pain. Just that my neck hurt. No note of my unclear speech either. I’m so angry about it to this day. I can’t for the life of me figure out what caused this if it’s not MS. If anything it was a stroke. A stroke at 28 seems crazy but I guess not impossible. I still have pins and needles everyday, muscle tremors, blurry vision, brain fog. Some days are better than others. Praying I get an answer soon.
Well definitely something is going on! I think the spine MRI will help for sure. Also when you say “fine” that is all they said about your brain MRI? I had both a spine and brain with and without contrast. Did you have contrast? I can’t believe all that happened to you no am so sorry to hear that and you don’t have any answers yet. Keep pushing, don’t give up and seek a second opinion of you don’t have any answers from the spine MRI. I will be sending positive thoughts your way in five days!
@@SaraslivingwithMS Thank you! And they said my brain MRI was fine. It was with and without contrast. But I’ve heard of tumors being missed too so Im not very trusting lol I was seeing one local neurologist who ordered the brain MRI and when the radiologists report came back that nothing was wrong I asked my neurologist if he looked at it and he said “No we trust the radiologist” So my neurologist refused to even look at it. That rubbed me the wrong way so I found a neurologist a couple towns over who specializes in MS. He ordered my spine MRI on the 26th and I’ll get the results of that the same day and he will look at my brain MRI as well. I’ll update with any answers.
@@slipperysnake9410 I can’t believe the nuero didn’t even look at it!!! They could at least do you that courtesy Yes please keep me posted
Check your B 12 levels. May be deficient in B vitamins.
@@lauratohome it was checked. It was 888. They said it was surprisingly high. The max is like 900
Thank you for sharing Sara. My PCP thinks I might have MS because of the symptoms I’ve been having. But I’m concerned that because I’ve had drs look at my chart and see that I also have mental illnesses that they’re going to write me off as “crazy” as this is what they did a yr ago.
I already have been diagnosed with fibromyalgia and other autoimmune disorders but I’ve been having other issues that have gotten worse since I saw my neurologist last year. The dr I saw said it was all in my head.
Right now I have numb patches on my left thigh and calf, pins and needles in my arms, legs, face and feet. I also have incontinence, extreme fatigue, brain fog, vertigo, eye pain, I see sounds and spots, trigeminal neuralgia, burning sensations in my leg, even tho the area is numb, balance problems, difficulty walking, itching (it feels like bugs), tremors, sometimes I find it difficult to swallow like my brain forgets to tell my throat to swallow, and sometimes I am not able to use my legs or feet to walk. I currently use a cane and I’m 44 yrs old. Last MRI I had - did not have any lesions. But I did not go through a 4 hr session like you did. I’ve read that some cases of people with MS don’t have lesions on their spine or brain. So I’m concerned that with all these symptoms and if nothing shows up - they’ll blow me off again. I’m also having gastrointestinal problems and have lost a lot of weight. I’m so tired of being ignored - I know something is wrong but no one is listening.
I am so sorry to hear that. Yes my MRI was a full brain and spine with and without contrast. I had lesions all over the place. How long ago was that? Did they do a spinal tap? Have you tried a second opinion? I have been to 5 neurologists. It’s tough!
Be adament that your dr checks. “Crazy” doesn’t show on a mri. MS does.
Tell them scan me. I can’t fake pictures!!!
Good luck ❤
🙏🙏🙏
You have the same symptoms as my son before he was diagnosed. He lost vision in one eye. He complained about neck pain for a couple of years. He woke up with numbness down his waist. It's called the MS hug. He has lesions on his brain and neck and was diagnosed by a Neurologist he has MS. He loses his memory often. I noticed his feet are a purple color. Believe me nobody wants this horrible disease. It causes brain and spinal damage. Best wishes to you.
Fibromyalgia and MS are often mixed up by doctors. But I believe MS sufferers have lisons on the brain
Thanks for the info x just had a brain mri to rule out ms, new onset pins needles face, now hand, cold spots, few dizzy spells now im rolling my ankles multiple times a day
I have had these symptoms since I was a child. It started with severe bone pain and went to my joints. If I tried to sit with my legs underneath me while picking berries, my brother would have to help me to stand. As an adult (53), I have those symptoms and more. I moved to a small town and the Healthcare is really bad. I'm on my 3rd doctor and she just told me her last day is the 22nd of September. My appointment is on the 27th! It's so frustrating to be brushed aside like you're crazy and drug seeking. As I slowly go down the drain. BTW, I live in the NW.
Yep a pinched berve or slipped disc ..lesion on spine and cord tear. However severe pins and needles is under stated for years now that was not said multiple sclerosis yet. I feel seriously debated over and a missed diagnosis. Yes waiting for dimple mishaps weak knee and fatigues ..
Have you had an MRI yet?
My first symptom at 28 was numbness on my hands and feet but I ignored them and they went away but the next year I had double vision. I went to the doctor and got diagnosed after a series of MRIs. I was on medication for about 10 years but I stopped because they were injections and my body wasn't reacting too well. I'm not doing too badly and haven't had a flare up in years but I feel like I didn't reach my full potential in life. You see I am a dentist and my diagnosis came just as I was s
Thank you for the comment, I think the ending got cut off somehow. I also had many symptoms that I dismissed and did not even think about MS. I am trying to get the word out there, I think earlier diagnosis would of helped my leg issues that I struggle with now. Thank you so much for the support!!
My first symptom (numbness of the right side of my face) was my first relapse. I have never had any neurological deficiencies before. Suddenly, I got an MS diagnosis. Even my OCB was negative and had only two lesions in my brain.
I have these symptoms .Today I just experienced numbness and tingling on my left arm as if it’s not connected to my body when I move it.I had two instances of events that I couldn’t walk ,one was when I was a teenager but I got back up after being on the floor for 20 minutes.I also lost my eyesight during my teenage years too but only for few minutes.
Then two years ago,I suddenly felt pain on my right knee that it’s uncomfortable to drive and walk.I was at work one time and that right knee was numb for 30 minutes ,I was scared I was gonna crawl just to get home.Therapy somehow helped.
I had radiculopathy on my right arm few years back so somehow I thought ,oh well it’s probably my pinched nerve on my neck.But this pain on my neck is a pain in the neck every single night that I couldn’t sleep at all. The pins and needles on my legs and arms just became norm to me.
Nice kitchen!
Thank you!!!
Thanks for sharing. Seems like so many of us made the same mistake: waiting too long to see a doctor. I also started to pass everything off with "I am just getting older."
Does it make a big difference getting diagnosed early
@@RobdeKlerk-qg6lc Perhaps? If we start a DMT earlier maybe it there would not be such a quick progression?
@turk223 Thank you my friend for your quick answer...Good luck
I was diagnosed with multiple sclerosis last year. What really makes me angry about my condition is that 5 years ago my ex mother-in-law said she had an idea or a suspicion I had multiple sclerosis. If she really thought that was the case, she should have told me, especially since her husband has it as well!
That’s frustrating because an early diagnosis is so important!
In fairness to your ex mother-in-law, unless she is a physician, she may have been worried about over-stepping her bounds, and didn't want to risk worrying or offending you if she was wrong. I'd be inclined to feel anger toward my less astute primary care physician: where were they and how did they miss the signs? The fact that her husband has it was irrelevant albeit coincidental, as you aren't genetically related. I noticed a friend's signs of Parkinson's Disease four years before she was officially diagnosed. My unasked-for two bits could have ended our friendship. I have an autoimmune disorder with similar symptoms to MS, and l wish you well. (I could have been diagnosed earlier in retrospect also, but that's the thing about hindsight.) ❤
@@Bearwithme560 yeah, my m-i-l has no problem overstepping her bounds and prying into other people's business.
Her logic is ridiculous and looking back, anything that EVER went wrong in her life wasn't her fault, even if it was 100% her's.
I wonder if she mistrusted her own instincts and thought she must be imagining things because her husband has it. And decided it would be silly to tell you her feeling and would just scare you. Sometimes your feelings are wrong so people don't always trust their feelings - even if later it all makes sense to them.
@@junbh2 maybe true, but she truly believes ignorance is always better... maybe explains being married 3x... #1 by playing hookie in high school, #2 married in her own living room and #3 in a church
MY sister has MS. all the Dr. want to do is give her meds no talk about healthy eating, exercise. Her MS came on immediatly following a flushot. She instantly got blurry vision. She now does the Good bye Lupus protocol.
Same thing with me my Neurologist told me that I was going to need more sleep I thought she doesn't know what is going to happen, but she was right
Sleep is so important ❤️
Hello Sarah, thank you for your post, most helpful. My question, please, is when you eventually went to see the doctor, what did they find, how did they find that showed the MS? Thanks
The same thing happened to my cousin. She couldn't tell anyone about her problems because her job would hold it against her. She later died.
That is awful!! I am so sorry
😢
So many diagnosed with MS since the rollout. 😔 There are some great natural treatments for it. Keep researching 🙏🏻
I totally agree, I'm in Australia 🇦🇺
All you need to know to avoid MS is never get a shot.
What other natural treatments are there could you pls share
@@noniemendirattaparasite cleansing is number one.
I believe I may have MS and I agree…I know why! 😢
Very kind of you to share your distress and illness. What support do you have to manage your symptoms. Are there any alternative treatments to help?
Thank you!
@@SaraslivingwithMS There is a book by George jelnik. It is called 'Overcoming multiple sclerosis'. Written by an australian doctor. Worth a look. See if the library could supply it to you for your perusal
I’ve had the symptoms of MS for years. The neurologist even put me on a MS Medication. But no formal diagnosis. I got diagnosed with SPS by another neuro.
Thanks for bothering - and doing this. My friend has MS and really suffers, seemed to take years to get an actual diagnosis. Can't help but wonder if she had found out sooner might things have been better.
I agree it’s tough to get a diagnosis. I realized I had symptoms for years and know it would of been better if I got diagnosed sooner.
I'm still going through tests to figure out my symptoms
Good luck to you. I hope you get answers quickly
Hi Sara. Not likely that you delayed followup making a diff.
Actually in a way,, it might have been a good thing.
I think it would of helped my walking if I would of done something sooner. That is my worst symptom that causes me the most agony.
This sounds exactly like my symptoms and they still don’t know what’s wrong I’ve been trying to get help for over 3 years now same sometimes legs to all of it
I was diagnosed with MS on the 19th of December it took 15 months to get diagnosed apparently my neurologist said it first started 12 years ago .. I'm 53 in June.
Did you think you had symptoms those 15 years and didn’t realize it was MS or the symptoms started 15 months ago?
@@SaraslivingwithMSHi Sara .. some of my early symptoms started 12 years ago yet I thought nothing of it .. having sat down face to face with neurologist in mid 2022 and going through my history ... however I when I went to my Doctors concerned on end of November 2021 initially he suspected I had motor neurones disease or MS .. I had 3 neurology appointments, 3 mri scans, 20 odd blood tests, coordination and eye coordination test ect and a lumber puncture to out rule devics disease .. I was then diagnosed with MS thi December. I'm due to start kesimpta after having a course of Hep B vaccinations.
I am in the beginning the diagnosis stage. About a year ago I began noticing chronic fatigue and a dull headache that never went away. I started noticing difficulty standing after I had been in a seated position for more than 30 or 40 minutes. Stiff neck soreback and painful hips. How about 6 months asome very mild memory and cognitive issues begin getting worse. Now it feels like I have a broken bone in my right foot and I have neuropathy and half my foot. Unfortunately I live in Florida and there is a doctor shortage. I started seeking help in October and my very first appointment with anyone his January 24th, They believed that I also had a mini-stroke, There is a 7 month waiting list for neurologist. Because I am a new patient and not an established one. My primary physician believes that I have MS but he cannot test me for it he is sending me to a rheumatologist my auto immune markers were severely high. It's progressively getting worse. Thank you for sharing your story because there's people like me out there that are desperate for answers.
I hope that goes good!! That is a long wait!!
I’ve had so many symptoms and I say it to my doctor. Such as . When I’m in bed if I point my toes or do a certain movement with my foot my foot will go I to a spasm that will draw my foot to the side . It’s painful and I feel my foot will break if I don’t get up and walk. I walk it out. My foot will relax . I get back in bed and it involuntarily is forced again to a side position and is painful. This doesn’t always happen but there are times it does. My other foot has started this also. My doctor don’t seem to listen or think anything. My shoulder will get extremely painful and my upper arm muscle gets numb and will itch. Again my doctor will not think anything. One time I thought I had Covid because on a cruise I got sick. Coughing , couldn’t breath. Sick for a month, went to dr said I think I have Covid. He denied me. Three months past . I was gasping to breath, couldn’t sleep because I couldn’t breath, my coughing was horrible . Finally I felt like I was dying. I forced my doctor to order me an MRI. This is after other specialists said I had COPD, or bronchitis, or asthma. Finally I got the MRI. I had a huge cyst behind my heart and lungs that was killing me. Had surgery like open heart. My symptoms in my feet are strange. I don’t walk right. Odd sensations like something crawling on my foot or leg. What kind of doctor do you say I need to see. I’m almost bedridden with fatigue it seems. I fall asleep in my chair from fatigue. Ty
Oh my goodness! I am sorry to hear all this!! Did you have an MRI of your brain/spinal cord? I definitely think you need a doctor that will listen to you! Isn’t it so frustrating!? Did those foot issues happen after your heart surgery? Was the doctor that treated you for the cyst informed of these new symptoms? I would recommend seeing a different PCP that will listen to you and refuse to leave without a referral to a specialist. I wish I could say what those symptoms are for sure. It sounds like spasticity.
Try my herbal medicine.. I can help you with my roots nd herbs
Some doctor were on TV, recently reporting research findings on MS I don't know if it was the cure but, the talked about putting MS patients on the keto like diet and seeing dramatic results for the better! I didn't listen to the entire interview, easy to look up . Wishing everyone good health. .
Thank you! Yes there is research out there on that and I have tried it, but it did make my stomach upset. I have been on the Mediterranean diet, however I have had recent seizures, so may have to revisit that.
Thank you for posting this. I have all the things you mentioned except for the dead knee issue. Mine started with extreme fatigue like you mentioned. That was a little over a year ago. I tested positive for autoimmune disease but I don’t have a MS diagnosis and the doctors I’ve seen so far, are blowing off my complaints. I’m curious, how long from your earliest symptom to the deed knee progression? How much time did it take for you not to be able to walk? They aren’t listening because that’s the only symptom I don’t have. Thank you again and I really hope you reply
I had a lot of symptoms for years and had no idea. So it’s really hard to say I was in such denial. Even then with the leg symptom it took awhile. I would say maybe 5 years? The leg progression has been slow and steady maybe a few years. I wish I would of been better about documenting. If you watch my latest video I share some other symptoms and suggest keeping track of this stuff. I also have a video on my diagnosis process that might be helpful to you. Easier to explain then write it. I wish you well. Let me know how it goes!!
Keep seeing doctors until you find one who will listen. Good doctors can be hard to find, but you have to advocate for yourself, unfortunately. I have a different condition and it took YEARS to find a good doctor who will listen to me. A couple months ago, I started having issues with my balance, extreme exhaustion, etc which totally can be related to me previous condition. However, last week, part of my face went numb. I went to see him this week and that isn't something usually related to my other condition. Considering that and the symptoms I have been having the last few months, he ordered an MRI to check for MS and some other things right away. A good doctor will listen to you and do what is right. I hope you have found one by now.
I’m 59 years old and diagnosed with MS 5 months ago. Neurologist says I’ve had it for 20 years.
20 years wow? Did you have symptoms? How did they know it’s been 20 years?
@@SaraslivingwithMS Started with bilateral optic neuritis age 39. Had a right arm that didn’t work properly when doing heavy gardening 7 years ago. Vertigo and double vision was thought to be migraine? My brain was taking longer to complete tasks. MRI showed a lot of ‘brain damage’, so I had to retire. My Rheumatologist put the story together as MS. She was right.
Do you have body aches all over your body? My body aches all the time with bad fatigue. I've been fighting this for a whole year. Tingling and pain in hands and feet. Some days it's hard to get up and going. Constant pain, nausea. It's wearing on me. They want me to do a sleep study to check if I have sleep apnea. I think I need to get checked for an autoimmune disease.
@@bubblybernice4863 yes listening to your body and being an advocate for yourself is so important! If you think you should get more than a sleep study, ask for it. Sounds like there is something else going on. I never had body aches or nausea, but there are many different symptoms, they should be able to help you find out what is going on! Good luck to you.
Thank you for sharing. Did you have any issues with constantly dropping things? Like almost every time I pick things up, it just drops from my grasp. My ENT mentioned that he believed I could have the early signs of MS. That was a while ago and I havent followed up with the proper specialist, yet. Ive had weird tingling sensations in both feet and hands at times. Im tired a lot, but I blame that on another issue that I am currently living with. I guess I need to find out whats going on, but dont know where to start. Thanks!
I do drop things sometimes. Not sure if it’s enough to blame on my MS. I never though my symptoms were MS related, I was shocked. However it’s important to get diagnosed and then you can start working on feeling better and preventing further symptoms.
@@SaraslivingwithMS Thank you for your reply. I will make myself get to the proper doc and find out whats going on. Thanks again and Best Wishes.
I have MS and can attest to the fatigue and vision problems. Do you get the Momentum magazine from the National MS Society? There are often some interesting/ helpful articles in it
Yes I do get it. I have not read the latest one on MS and diet yet, but sounds interesting. I have tried a few diet plans. Have you read it?
hi i don’t know what ms mean??
but i can advise anyone with fibromyalgia like me to eat clean specially green juice and anti inflammatory fruits and vegetables 🥕 make smoothies and turmeric and ginger and avoid bad food and drinks trust me you will feel 90% different with 1 week or 5 days don’t forget drinking water and sport
Multiple Sclerosis. Yes eating healthy and having a clean diet is so important!
I would suggest watching the CZcams discussion by Dr. Alan Macdonald regarding his autopsies on 10 MS patients and his finding parasites in all of their cerebral spinal fluid.
There are so many theories and thoughts out there. It’s crazy. I wish they would just figure it out.
@@SaraslivingwithMS I don’t think this is a theory. Dr. Macdonald said in his speech that the science has been around since 1950, yet ignored by everyone except him, which is why he performed the autopsies. Bottomline, They don’t get rich if you get well. SMH!!!!