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Internal body vibrations all night

Neuropathy | Last Active: Jun 1 7:55am | Replies (45)

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@j77

Yes!I never thought I would be in this situation.I worked in healthcare and knew it could happen,but you never think it is going to be you.I am glad that you are doing better,but sorry you had to go through all of that.I think whatever I have was brought on by a few things.I think the years of anemia probably wore my body down and than when I got that infusion my body probably went into some kind of shock since it was the high one time dosage.I also think I had covid at that time too,but did not know it at the time.The Beach place I was staying at right before I got the infusion had people previously staying in it that all got covid.I did not know this until later.The day I had the initial reaction that stemmed all of this it was really hot and and I was walking on the bike trail the day before in the sun/heat.Something with the iron/heat/covid.The really weird thing is that my years of severe periods pretty much stopped after the infusion for almost a year 1/2,but just recently started up again.I think that is somehow involved too.Maybe some kind of infection.I got checked for everything,but I am going to get rechecked for cancer.The only thing I have not been checked for is endemetrosis.A nurse I use to work with told me the only way they found hers was through larascopic surgery.I didn't realize thar endemetrosis can spread to all of your organs.The Doctors are confused because they can't really find anything.My MRI for spine was normal for my age.A little bit of stenosis,but I went to a spinal surgeon and he said everything looked o.k.He was telling me to get another vaccine because he heard that can help if this was all brought on by covid.My one EMG was normal and the other EMG was not,but the neurologist told me he just thought it was possibly a metabolic muscular disease.I went to two endricinologist and they told me it is not metabolic and that it is neurolgical.I have put on alot of weight.I am sure metabolism is involved,but I am pretty much couch bound too.I just don't have any strength in my back,behind,neck shoulders,trunk.I did Genetic Testing and it showed a possibility of muscular dystrophies such as limb-girdle,but both Neurologists told me it is not that.They just don't know.I meet with a Team of neuromuscular doctors next.I did have a few positive ANA's with a high speckled pattern of 1.80,but the Rhuematologists told me it is not Lupus or any other Autoimmune.They were saying neurological as well.I already have thyroid disease and the only other disease we have in our Family is Lupus.When I walk it looks to me like I have that disease Anklosing Spondylitis.I use to stand so straight and have such good posture.I think a virus attacked my spine and that is probably why my first symptoms were the stiff neck and not being able to swallow.I was even looking at neurological diseases that could be brought on by low iron.Myasthenia Gravis can be cauaed by low iron,but I tested negative.The Doctor told me that a specific antibody for MG came back borderline,but labcorp did more testing and it was nothing.I just keep on hoping that someone will see my symptoms and recognize them and be able to tell me what it is.No Doctor knows.

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Replies to "Yes!I never thought I would be in this situation.I worked in healthcare and knew it could..."

How incredibly frustrating! And mind-boggling.

Yes, it’s neurological. Your symptoms are. But why?
The million dollar question, I know.

Interesting that you have thyroid disease (I do too), a family history of lupus and a positive ANA. Did you get any other autoantibody work done? How about autoimmune muscle diseases like dermatomyositis? Has that ever been mentioned?

This puzzle must be solved. You need answers. Even if there’s not much doctors can do, just knowing what’s wrong can be comforting in a way. Like you, my symptoms have not improved, only stabilized, but knowing that the cause is autoimmune came as a great relief. (The differential included paraneoplastic syndrome—ie, cancer). So, re: your situation: big guns may be needed. Start with a neuro at NIH or wherever you said the closest academic medical center is.

I also used to work in healthcare, so, yeah, you see an awful lot of horrible sheeyut, but you never think about it happening to you. That’s how you survive in such an environment, I suppose. I got the hell out. lol. That’s how I survived.

Anyhoo, take care, my fellow neuro friend.