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Desperate! MS or Myasthenia Gravis type symptoms, testing negative.
37-year-old female, no drugs or excessive alcohol.
I am getting very depressed trying to figure out what is wrong with me. To start, I will say that I have a painful annular tear on L4. I had physical therapy over the summer for 8 weeks, then the MRI. Showed degeneration in l4 and l5 and the tear. It's a small tear, but it was leaving me screaming in pain for a quick second throughout the day. I saw an orthopedic doctor on September 18th to go over my MRI. He told me to stop working out for now, gave me a steroid shot, and told me to come back in 3 months. (I had been on a muscle relaxer for a couple of months at that point, and he told me to continue.) A couple of weeks later, it felt like my legs were getting weak, and my stabbing back pain was getting worse. I'll start listing the symptoms now:
-Oct. 12, both legs gave out, and I fell for the first time.
-Legs got progressively weaker and weaker, falling more
-Stabbing level 9 pain happening all throughout the day now
-Oct. 22, I got freaked out and saw a spine specialist, she said my back issues wouldn't cause both legs to be weak. She gave me a different muscle relaxer, celebrex and a 6 day steroid pack
- Not long after that appointment, it felt like my arms were maybe getting weak, but I was in so much pain with my back that I tried to ignore it
-About a week, after maybe a little more, my arm weakness was just as bad as my leg weakness, and my hand started having a tremor
- By November 7th I was wobbling everywhere, I could no longer stand normally. I was now not only falling from my legs giving out, I was falling head first because of the wobble.
-Blood pressure was the highest it had ever been
- I was screaming out all the time in pain; it was very embarrassing
November 8th I went to the ER because I was so scared.
I was there for 3 days.
I told them all this information, in addition to a few other problems that I thought may be connected
- Unable to fully empty bladder since Oct 2024
-new heat intolerance
-periods only last 1-2 days now
- I have trouble talking now, its slow and sometimes slurred, my cognition has declined as well, probably from not sleeping well
I thought heck, maybe I have MS.
Brain MRI was clear, spine MRI showed no change since the September one
No lupus ( mom has it)
No myathenia gravis ( sister has that)
No lyme disease
All the bloodwork they did looks fine, except it's showing I am inflamed.
One doctor in the hospital saw that I have bipolar disorder, then said it may be psychosomatic. I have never had issues like this before. I take pride in being healthy and I'm a go-go-go type of person. Why all of a sudden would I be imagining this? He said my bladder issue is separate and is normal for a woman who has given birth. I am only 37 and gave birth 10 years ago. They said my back pain is much worse because my muscles are weak. They did see that when they pushed against my muscles, they would start to tremble like crazy. I was overall walking a little better and in less pain when in the hospital, because I hadn't moved in 3 days. The more I try to do, the worse I get.
I am feeling better now, but I am still very much not normal. My arms are exhausted just typing this. I still have to use the walker sometimes. I pretty much still have all the problems, just not as bad as in November. I had a follow up appiontment with a neurologist that told me my results were all negative and refused to treat me further. He wanted to put me on medicine for hand tremor. I said my hand is shaking because of extreme weakness. He said he is not treating that and he doesnt need to see me again. I am at a loss!!! What on earth could be wrong with me? I have bipolar disorder and recently found out that I have Hashimotos disease, but other than those, im healthy! I cannot keep living like this. I am massively depressed and hardly sleeping. I have a rhumetology appointment in February but I have no hope.
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You are going more than you share. Please check for SS. The symptoms are very similar to. MS. I hope and pray the best for you.
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1 ReactionI am so sorry you are feeling so terrible!! I went through a period when I was not able to sleep for days! It was horrible and I felt like I was losing my mind! My doctor started me on a sleeping aid which allows me to rest at least. I still have constant burning sensations throughout my body but my body can rest!
I pray you find some relief soon!
You are not alone! I pray God fills your heart with hope and gives you the strength to keep going!
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1 ReactionNot having a diagnosis is very frustrating! I suddenly (without pain) basically couldn’t walk out of my sisters house after having supper there! ( So I’m using a walker since then!) This was Memorial Day weekend. I went to the ER and they did a CT scan which was clear. I couldn't get an MRI scheduled for at least a month which showed some compression and stenosis at T12 and L1. So I had surgery to alleviate the compression and try to deal with the stenosis. That’s been 2 months ago and I still can’t walk. So I am wondering if I have something like MS, Myesthenia Gravis, etc.
I also got some symptoms of Cauda Equina (some saddle anesthesia) … but no pain or incontinance. My spine Dr says the compression caused some nerve damage and they should slowly heal and I should walk again!!! I keep wondering if I have something else going on!
So I don’t have advice… maybe you have some for me! You’re too young to have all your issues and no diagnosis!!! I’m 83 but I was doing my yard work and I want to ditch this walker! I wish you the best… diagnosis!!!
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2 ReactionsI feel for you!
I too have been suffering with neuroligical issues for years now with no proper diagnosis. So frustrating!
But you are not alone ! Keep trying and do not give up!
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1 ReactionPlease check for superficial siderosis. Symptoms very similar of MS.
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1 Reactionwelcome to the group, there is quite a group of people that are on this
site every day and with a wide range of issues or needing to find answers
like you are. just curious but have you been bitten by anything that you
can recall? you have numerous things going on and i'm no doctor and just
thought of a bite from something. in the meantime ill send a prayer for
you. have a blessed day-----Prayer sent.
I had a similar experience. I eventually was misdiagnosed as having myasthenia gravis, but I did not respond to treatment and it became obvious that I did not have MG. In 2024 I went to Mayo, and was diagnosed with Functional Neurological Disorder (FND). I later did the BeST program at Mayo, and I learned much that helps me manage my condition. FND is often confused with Conversion Disorder, but it is a neuro disorder, not a psych disorder. You test negative on MRIs and other neuro diagnostic tests because FND is a functional problem, not a structural problem (such as MS, which is a structural problem of the nerves). To use the common computer analogy, the structure disorders are "hardware" problems, FND is a "software" problem. It is real, it is NOT "all in your head". Like many with FND, I went thru the doubts about my sanity, or I was imagining everything. It was a tremendous relief to find out that there are many of us dealing with this very real, but still poorly understood, disorder.
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2 Reactions@randallshields56 I had two tick bites in May that kept looking worse and worse. One got the bullseye around it. I was treated a few weeks after the bite with antibiotics. I’m testing negative for Lyme.
@stevegrinstead Thanks for the suggestion. I feel like my symptoms don’t really match… no hearing loss etc.
I had a lot of similar issues a few years ago. Then it progressed and I started having involuntary movements daily. After I collapsed on the floor and started having a seizure I was brought to the hospital. I was in the hospital for a week and was on a video EEG. The neurologist told me it was in my head. I went to five separate neurologists. Finally, I went to a movement specialist and I was diagnosed with Functional movement disorder. A pain specialist diagnosed me with fibromyalgia. And a migraine specialist diagnosed me with complex migraine and vertigo. All of these have overlapping symptoms. Look up FND, also look into fibromyalgia. Dont give up searching. I drove eight hours away to get a proper diagnosis at the Cleveland clinic. Good luck.