8 months or so ago I started developing significant spasms in my arms and legs; sometimes so strong that it causes severe jerking. 6 months ago I started losing muscle mass - now over 40%. Three months ago a neuroquant MRI was done and they found a number of legions in the periventricular region, but apparently not in such a manor that would indicate MS. It also showed atrophy in a number of areas, most notably in the cerebellum where I sit at the 2nd percentile (down from the 60th a year ago). I also have a lot of inflammation in a number of other areas.
My neurologist has no answers and tells me to simply go to the ER when the muscular symptoms get bad which is useless since they say I need a neurologist. She is sending me to a neuromuscular specialist because she says nothing fits well.
For background, I have a difficult time staying on my feet and being active before severe fatigue and pain set in (my legs start shaking and getting weak). Too much physical excursion renders me fairly useless. My intolerance to heat has gotten so bad that I can spend about 10 min outside here in TX before I develop significant joint pain and nausea. I have Multiple Autoimmune Syndrome (pernicious anemia, undifferentiated connective tissue disease, chronic inflammatory demyelinating polyneuropothy, sjogrens syndrome autoimmune encephalitis, and vasculitis), and dysautonomia. The rheumatologist has me on CellCept and Rituxan, and will be adding Actemra next week.
My question is this, has anyone else experience similar rapidly progressing neuromuscular/neurological symptoms in a similar context? If so, what was the outcome? Doctors are providing no solutions that help, and have been told that I may have to accept that whatever is causing all of this won't get better and that all of these symptoms will progress until the body shuts down. If that is the case, so be it... Just want to see if anyone has been in a similar boat and had any luck.
Thanks!
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TiredNerd
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Hi It sounds awful, plus not much support doesn’t help, My own experience is I had an infusion and was quite ill, I lost 2 stone and lost so much muscle weight, I didn’t want to eat , I started taking complan which is like a milk shake , plus probiotics , I have to say this got me back on track , still having my rhuemy problems can’t seem to find the right drug yet, but hopefully fingers crossed there will be something. Good luck
I am so sorry that I can't help as you are having such an awful time. I just want to send love and healing hugs to you and hope that you get some answers from somewhere.
I am sorry that I can't help you, but some of your symptoms sound very similar to mine. I also get muscle spasms and on 3 occasions had them so badly that I stood still and couldn't move at all, it was frightening. I can only stand for about two minutes, if that, and then I get severe pain in my back and I am always tired. In the mornings, it takes me ages to come to and I fall asleep sitting on the loo or if I am trying to read something, it falls on the floor over and over again.
I also jerk quite often but put it down to the fact that I am falling asleep without realising it. Over the last 6 years of so, I have developed a shake in my hands that has got worse and worse. I have always loved photography, but my photos come out all blurred now because I can't keep my hands still enough to take a clear photo. I have been seen by a neurologist about this and he says that I have an essential tremour. I was given some tablets to try but couldn't tolorate them and he said there was nothing else to be tried.
I have extremely bad restless legs and that started about 20 years or so ago. By 2007 it was so bad that I was lucky if I got an hour's sleep each night. I became like a zombie, even having trouble remembering my own address or filling in a form. I was seen by a really nice neurologist who said he had never seen such a bad case and by the time I saw him I was being sick, even in his surgery. He wanted me to go onto a medication called Pramipexole that at the time was not available on the NHS. However, through trying very hard, I was eventually allowed to have it and it worked and now it is available on the NHS anyway.
Over the years, I have been told I have all kinds of health problems. To begin with I was told I had M.E. then fibromyalgia. It went on with undiffirentiated connective tissue disease, rheumatoid arthritis, PsA, Sjorgrens, sleep apnoea, aneamia of chronic disease, scoliosis, trapped nerves and many other issues. I have had an MRI on my brain and was told all was well. Over the years, these problems have got steadily worse and I am sure that doctors and specialists just don't know what to do and I keep getting told that I am a very complex lady. I have been seeing a spinal specialist and now he says there is nothing more he can do for me and said to just take pain killers. As I already take Oramorph and it doesn't help much, what more can I do?
It is an awful situation to be in and I cam empathise with you so much TiredNerd, and I only wish I had some answers for both you and myself. Sorry that I have rambled on, but I just wanted to let you know that I too, am in a similar situation. With best wishes to you. xxx
It sounds like you’re dealing with a lot, so I’m sorry you are not getting the help and answers you need. I know how disappointing and terrifying it is when you have so many symptoms and you are progressing, yet you don’t know why.
I’m awaiting to see if I have RA, and I’ve had neurological issues for many years before the autoimmune stuff started. However my symptoms weren’t rapid.
Most of my symptoms are different. I do however get jerks a lot in my legs, have heat/sunlight intolerance, and the fatigue some days is debilitating. My legs shake going downstairs. I can’t walk a straight line. My body sways if I stand w feet together, my balance is unsteady and etc. I walk and talk like a drunk when I’m tired. Neuro I saw did say I had hand weakness, but he dismissed my symptoms. My neuro symptoms,’ much more than I listed, fit something like MS or Cerebellar Ataxia. Plus I have a weird tongue spasm that I found someone with MS having.
Please keep doing your own research and try to find another neurologist who can help figure this out. Hang in there and best of luck!
I'm sorry I can't help at all but I send you some good luck in getting some solutions. I know vasculitis is difficult alone without all the other health issues. I don't like the bit about having to live with it, you need more support from doctors etc 🍀🌹
I was reading the Vasculitis site in here trying to figure out why the Rheumy I saw ordered 3 tests to check for Vasculitis. I came across a post where people with Rheumatoid Vasculitis said they got severe muscle spasms and pain in legs, like you. I’m not sure what type of Vasculitis you were diagnosed with. Maybe something like that is causing these issues, and that’s why your neurologist can’t figure it out.
Hi TiredNurd.I have the same symptoms that you have.
I was in hospital 10 years ago for 6 weeks because I was in so much pain. Then I was eventually diagnosed with that bloody horrible disease called Fibromyalgia..
I'd never ever heard of it before, in fact none of my Family had..
It's an invisible illness that you can't see, but boy can you feel it. Before I was discharged from hospital the Neurologist wanted to have a word with my Hubby and myself. He told us that what I have has a very high Suicide rate. We just couldn't believe it.But I do now.
The pain is absolutely terrible,but it doesn't go away. They don't know what causes it and there's no cure for it..
There are different kinds of medications that you can have to help you. But sometimes they just don't help.
I hope that you don't have it,because it's something that you would have to live with. You have to cope the best way that you can. But if isn't easy, because as you get older it brings on other medical problems. I have Rheumatoid Arthritis, Osteoarthritis, Osteoporosis and a degenerative spine. I had these problems before I had the Fibromyalgia, but everything have got worse during the past few years.
Ive got 2 Heart Valves that aren't working properly, only 1 Lung working properly, Angina and COPD, and Asthma.
I have Diverticulitis and IBS..My immune system is very Low. I'm a wreck to be honest with you..
When you see your GP ask him/her if there's any possibility that you have Fibromyalgia. Theres no blood test or xray that can tell if you have it. It depends on what they can rule out.
You can go to my profile for my condensed synopsis. I was eventually diagnosed with Stiff Person Syndrome. It is very Rare! Most doctors have never heard of it, never mind seen an actual patient. I have actually had a so called “expert” at a Uni hospital who had written a textbook chapter on SPS not recognize it when it was in front of him.
I started out with fluctuating symptoms that were often dismissed. Given diagnoses that were in my chart but weren’t actually told to me. I have had providers ask me, “Is that even a real thing,” or “you’re making that up!” when I tell them I have Stiff Person Syndrome.
What sticks out in your story is pernicious anemia, UCTD, vasculitis, weakness/hard time staying on your feet. All of these go hand in hand w/ SPS, and it tends that to mimic or get misdiagnosed as MS a lot.
check out these sites for more info and educate yourself. Knowledge is power. Hope this helps in some way. 🍀✨🤞🏼
I appreciate the input! Interestingly enough, a year ago I had a very high anti-GAD65 level and was told SPS was very possible. Problem all my docs have is I will have very abnormal blood results and 2 months later the previously abnormal results (like the GAD65) will be ok but a whole another set will be very abnormal. My rheumatologist said I am a rare case where they can’t trust lab results. They have to do them, but they can’t buy much weight on the results. Instead they have to focus on affects (symptoms, organ damage, etc). Good times 😉
GAD65 results can change over time and are not indicative of treatment course. It’s a funny thing. If they are not versed in SPS they can make this mistake and go off course. If you are on Facebook, there is a group on there that is very informative with people from all over the world 🌎 who have it and have different experiences. There are also other people who have similar rare conditions, and how they found. answers. There are also 8 other known associated antibodies. Some people have had their GAD65 fluctuate into normal range once they are treated and then be told they don’t have SPS by another neuro who has never seen SPS and wants to remove the diagnosis. This becomes a revolving nightmare for patients who have to fight for care.
I hope you get what you need but I also implore you to make sure you advocate for yourself and make sure you are getting care from the right doctors. I can’t emphasize that enough. Trust you gut!🍀🌻🍀👍🏻
D🏃🏽♀️
**I have written about the other antibodies under a post titled “ Stiff Person Syndrome Part II” and it had a diagram of the antibodies and their associated characteristics if your interested.
Hi, I have very similar symptoms, not the heat intolerance, but its freezing here! But muscle weakness, spasming, lose balance often, I can't walk without a mobility aid anymore, and it has progressed quite rapidly. My muscles feel tight and heavy and its a hard thing to describe. But definately progressive weakness. My neurologist says its CIDP, which you've been diagnosed with also. So I guess I'm wondering if I've been misdiagnosed and should see another neuro? Cos its sounds like these symptoms are not CIDP. Appreciate any thoughts you have and I hope you get to the bottom of it. Best
Thank you for the reply! The CIDP seems really focused in my legs right now (the twitches and loss of feeling, etc), but they haven’t done an EMG on my arms and hands. I’m being to think my immune system just doesn’t like the rest of my body 😉
Good morning. If you would like support, information or just someone to talk to, our NRAS helpline is open every weekday from 9.30am to 4.30pm nras.org.uk/helpline/ 0800 298 7650. Or have a look at our website nras.org.uk. Kind regards.
Hey, I have been taking Rituxan infusions for about a year. I started out at 6months but was moved up to get it every 5 months. And so far I do ok on it. I also have MS, so there are only a couple of biologics they can try that is supposed to help with both RA and MS.
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