Stuggle to walk at times...involuntary jerking..spasms

[erika528]

I was diagnosed with POTS about 1 year ago following a virus.  Around that time I also had a couple of days where I could walk only a few steps before my legs would give out and not work.  So when this happened again this year I didn't worry too much about it.  However,   in additino to my normal POTS systoms I have gotten vry ataxic,  muscles are contracted most of the time,  I spasm,  reflexes are hyperreflexive,  and I cna't walk any distance.  This episode has gone on like this for 2 months now.  I have days where I am a little better..I am taking baclofan for spasms.  
I had one neurologisst suggest PLS and then another said no he didn't think so.  My MRI is pretty normal...nothing to explain symptomos like mine.  My EMG has remained the same,  I do have some nerve damag3e from Guillain Barre a few years back.  
Could autonomic dysfunction cause difficulty moving muscles and ataxia...and spasms and severe weakness?  

[auntissie]

Erika528,

I went to the Mayo in AZ.  I think the one in Rockchester is the one noted for the most knowledge on POTS.  In AZ, although I got my POTS and Ehlers Danlos diagnosis, wouldn't treat me.  They only diagnosis.  This was bitter sweet because we moved to AZ.  The hope was that I'd find a good Dr. and get some help.  So far, no go.  My insurance won't cover Mayo.  It is real expensive. But, really impressive.  The ones who diagnosised me was Electrophysiology and Rhumatology.  The Nurologist wouldn't acknowledge the other doctors findings and refused to agree that POTS could cause my tremors and gait disorders.  She tried to pull the typical all in your head thing.  So, despite scientific proof and many doctors saying the problems are POTS and related to that, even some doctors refuse to acknowledge it as a viable illness -- even at Mayo.  I feel sorry for anyone who unfortunatly gets a closed minded, arrogant doctor like her.  There are probably many people that didn't get the help needed because of pride and not being able to say they were wrong with their diagnosis -- when it's proven faulty.  I hope your visit to Mayo in FL works out well for you.  Keep us posted.

[HeidiHope]

I'm sorry you had such a bad experience at Vanderbilt.  That was one of the options my cardio gave me, but I never ended up doing any of the options last year, because I couldn't afford the travel.  Almost half my family's income went toward trying to figure this all out last year.  My cardio explained at one point that the spasms were because the excess adrenaline was trying to work its way out of my body, at the same time my heart wasn't able to pump enough blood volume to get decent blood flow to the extremeties.  I don't really understand most of what he explained, really, but I think that was the gist of it.  He felt there was something else going on as well, because POTS didn't really cover all my symptoms either, just like yours, but we never got further on figuring it out because my insurance wouldn't cover anything for cardiology, since it was considered pre-existing.  I hope the visit to Mayo provides some answers for you.  When are you supposed to go?  I go back to my cardio next month, and plan to ask him about this issue, as I injured my shoulder last week and am having horribly severe spasms in my neck, shoulder, and through about a fourth of my back.

[erika528]

Can I ask which Mayo you went to and which department?  I am scheduled to go to Mayo in Jacksonville and am scheduled to see Neuromuscular.  I am just nervous.  I went to Vanderbilt....bad experience.  I kept complaining of my neuromuscular problems..so then they said my POTS was the result of GBS which I had in 2001 (POTS diagnosis in 2008).  And my neuromuscular symptoms were in my head.  
It just got all confused.  I had gbs in 2001....was fine for 7 years altho I did have a lot of nerve damage...but no POTS stuff.  2008 got a virus and then got POTS symptoms...got diagnosed with POTS and then stated having really bad neuromuscular problems.  
So I don't' want to go thru that experience again.  I was horrible.  
I spent a lot of $$ and got no help.  I collapsed in the middle of the TTT...which still indicated POTS...but becuase most of my symptom compalints werre the spasming they said POTS diagnosis was almost insignificaant.  

[auntissie]

Hi erika,
I've never heard of those type of tremors either.  But, here's some of my story.  I was treated for Parkinson's for one and a half years, but nothing got better.  Then the neurologist thought I had multiple system atrophy.  We didn't like that diagnosis and went to Mayo.  POTS was finally the diagnosis.  My symptoms were so similiar to the other two illnesses.  I could barley walk at times, couldn't get my legs to pick up sometimes.  Have tremors that come and go.  The tremors are worse when I'm under stress.  I feel like I have the adrenal type of POTS.  One doctor years ago treated me with cortisol because of adrenal fatigue.  Every surgery I've had, I've been supported by it.  But my head wobbles like a bobble head and my right arm and leg shakes.  Fluroescent lighting seems to make it worse.  I don't know what it is either.  I just chalk it all up to this weird illness that few people have and few doctors know about.  Hope it makes you feel better to know you're not alone.  There are others that have thi dysfunction.  I, personally think, it has to do with the autonomic nerveous system issues.  I'm also starting to have some neuropathies.  I don't have a doctor yet since my POTS diagnosis.  I'm just trying to research and help myself.  We've recently moved and I don't even have a primary.  Got to go on the search.  DREADING IT!!!!!!

[HeidiHope]

I've never heard of it, but I am glad you seem to have found a dr. to help and try to figure this all out.  Good luck!

[erika528]

OK.  So I see a real smart neuromuscular guy today.  I was impresed.  Altho he did first question me saying that perhpas it was all anxiety.  But  this guy said he thinks that I am having more of a movement disorder than a neuromuscular disorder but he will continue testing further first.  But he says I have a truncal tremor...orthostatic truncal tremor.  He says this is what is interferring with my walking.  I am not so sure.  I just  have very bad problems after being upright or moving much.  So I am wondering if or how this could be related to my POTS.  
Has anyone heard of an orthostatic truncal tremor and what might be causing it??  And if it relates to POTS?   I am just so tired of having to prove I am not crazy!!  I am so impressed when someone acctually takes the time to work me me whose life has been so turned upside down by this all.....I am sure you can all relate!!

[HeidiHope]

I am so sorry you are going through all of this!  I know how hard it can be when your body seems to be breaking down and you don't have answers.  I don't have a firm answer, or any suggestions on what to do, but I wanted to let you know I've experienced a little of what you are talking about.  I was diagnosed with hyperadrenergic POTS last year.  I had pre-syncope symptoms when I was younger, but everything became much worse almost 7 years ago, when I was in a mountain biking accident.  A few months after the accident, after several sycope episodes and feeling pretty horrible, I went to get out of bed one morning and found my legs wouldn't support me.  I tried to stand up 3 times, only to immediately fall.  I called a friend, who picked me up, put me in his car, and took me to the ER.  Unfortunately, they couldn't figure out what was wrong at the time.  It took almost two days before I could even stand, and then I had to use a cane to help support me for 3 months, because my legs just would not cooperate.  I never did get a firm answer on why that happened.  My cardiologist just said that if I ever had that problem again, to come in right away to see him.  I do know that when I have a bad flair up of symptoms, severe weakness (where I'm crawling inch by inch to the bathroom from my bed, with multiple breaks) and spasms are pretty normal for me.
I hope you are able to figure things out.  I'm sorry I don't have a better answer for what is happening.
Heidi

[tonyad]

   Sorry that you are having these strange sx.  These sx do sound Neurological in nature. Have you gotten a second opinion from a different Neurologist?  And, what has your EP or Cardiologist said about this?

    Now when you stated that your MRI is "Pretty normal" what do you mean? Are there some irregularities seen on it?  Have you had a panel of blood work done ruling in / out certain metabolic disorders even though I do not think that would explain your sx.

    this certainly needs to be addressed without delay! find a doctor who is going to really look into this (Neuro). Do you have any other sx's?

~Tonya