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alijames

Dysautonomia Crash...and Ataxia= Msa?

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HI

I have both dystautonomia and cerebellar ataxia. Unfortunately, they can set each other off

and sometimes I go into a sort of blur zone--either with low bp and poor vision or complete

spatial disorientation and nausea and who knows what.

Sometimes my eyes seem to get rigid and locked. A small dose of valium seems to help

but I have a hard time getting this from my doc! Like I'm a drug addict 20 years into this mess.

I guess I'm doing extra badly now b/c the cerebellar ataxia is getting more progressive

and that causes the dysautonomia to go crazy. I feel soooo miserable! Many days

I can barely get up for more than a few minutes and then I crash again.

Does anyone have this combo? Is this really MSA????

Thanks

alice

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I am sorry you are having a hard time. May I ask what are your symptoms of cerebellar ataxia? I do get poor vision and spatial disorientation. Sometimes it feels like I am in a bad movie....it can be so frustrating.

I can understand why the valium works for you, it probably calms your nervous system. I am sure if your Doctor felt as poorly as you do, he would be taking it if it helped. Do you only have one Doctor? Sounds like he might not be very supportive?

I don't know much about MSA, sorry. Hang in there Alice....

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Use, what specific symptoms are ou having that seem to feed each other? And can you describe your most prevalent symptoms overall?

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HI

In reply-

ataxia means loss of balance -as in can't stand with feet together at all, clumsy movements, stagger,

imbalance and falling, vertigo and dizziness, forgetfulness, trouble sequencing, loss of depth perception,

muscle atrophy, choking, neurogenic bladder, apnea, fine motor problems, spasticity, and FATIGUE.

This is a constant. Though there are sometimes a few hours when there is little sunlight when it seems

my eyes relax a little and I can see more easily.

The diazepam was for the spasticity even in my eyes?

I got so dizzy when a PT gently moved my head from side to side that they couldn't record any bp at all

for several minutes. Finally got it at 70 over 40. It was 120 over 70 when I went in.

That's just one event, one day!

How do you know if it's MSA? My ataxia is progressive!

alice

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Alice,

I'm sorry that you are having these problems and I am sorry that you are getting more questions than answers on this thread. But, how is one evaluated for cerebellar ataxia? I have many of the symptoms you mention (although yours sound more severe than mine) and the docs have not been able to explain it. They look at me like I'm nuts when. Say I have depth perception issues. They believe me about the balance issues because I consistently have positive Rohmberg tests. And, what type of doc does the diagnosis? I would think a Neuro but is this a specialty within neurology?

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I also have Dysautonomia and cerebellar ataxia diagnosis.

From my understanding there is no way to ow if it is MSA.

Hard way to live, the not knowing.

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When my health blew up 11ys ago, that's similar to how I presented. It started one night with mild dizziness (I was driving and it was like I was drunk-my eyes were slow to respond to head movement), and the next morning I woke up and walked into a wall. Quickly, I ended up with double vision because my eyes were not moving (several cranial nerve palsies, especially 6th) and loss of balance. I experienced the eyeball freezing one night (and then they were ripping up into the top of my head-excrutiating) and went to the ER. At the time, I was also experiencing several MS symptoms including trouble swallowing and at that moment, loss of ability to urinate. MRIs and lumbar punctures were all negative, but they put me on high dose steroids in the hospital, which I tapered off of when I got out. My symptoms were resolving slowly, but at one point after a stair-step reduction in the steroids, the dizziness/eye problems increased again, so I had to increase the steroids back up and slow the taper. A month after that hospitalization, I ended up in the ER with status epilepticus (numerous seizures while unconscious), so they put me on anti-seizure meds; otherwise, they didn't know what was causing my problems. I was fatigued for months, had my thyroid med changed, more testing, ultimately diagnosed with adrenal insufficiency and put on cortef (a steroid).

Now.....with new docs....they are thinking all of that may have been related to an autoimmune crisis. It fits, and the absolutely newest diagnosis, as of last month, is that it may be Sjogren's! It's pretty new thinking to realize that that disease causes neurological problems, but many people with the autoantibodies actually do experience a similar cluster of "random" symptoms. The neuro specialist who said this said that MS and Sjogren's present very similarly, so if MS is ruled out, it's diagnosed as Sjogren's (plus I am SSb positive). I have been seeing a rheumatologist for the autoimmune stuff. Last year, I tried plaquenil (the "intro" level medication) but had an allergic reaction to it (doh), so had to stop. The next step is azothioprine, which I've been resisting, but know I should try.

My docs are also thinking that the cortef I was on for 10 ys was possibly helping to mask the problem. My endo says he doesn't want me on it if I don't need to be on it (I tried reducing it last year to see if I needed it, which is when my symptoms worsened again), but my other docs recognized that it's a bad idea to take me completely off it until we figure out what's going on and how to help!

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Actually most of your symptoms sound similar to mine when I am crashing just to different degrees. The only symptoms you mentioned that I don't have are the vertigo (although I make up forit plenty in pre syncope and greying out) and fine motor skill issues.

When I was first diagnosed I wanted to rule out PAF and MSA. You can do that by going to one of the major medical centers that does autonomic reflex testing. They'll run you through a battery of tests to make sure your autonomic reflexes are in tact- ensuring your hemodynamics change when stressed by external stimuli. In my case, although my autonomic reflexes are intact, my responses are consistently exaggerated - suggestive of hyperadrenergic Dysautonomia. If they are not responsive enough that is more suggestive of a progressive Dysautonomia.

I get pretty severe crashes about 50% of the time- when I'm crashing I struggle to speak- can usually say words but not sentences, (so talking is very difficult) walk, put any weight on my feet, process any kind of data, breathe, etc. I suspect my crashes are caused by mast cell degranulation that is releasing chemical mediators such as histamines, prostaglandin D2, NE, etc. (probably many more we don't even know about.). For me these crashes can be triggered by something external (stress, exposure to chemicals, upright too long, etc.) but they also appear to happen spontaneously. I've tried my best to get a handle on the cause and effect but so far I have been unsuccessful in stopping the crashes no matter how little external stimuli I encounter.

It sounds like inn your case you might consider going to Mayo, MN; Cleveland Clinic, OH; or Vanderbilt in TN. Any of those can help you rule out the MSA. If it is ruled out you might look into Mast Cell Activation. There is a simplified article in the recent DINET newsletter that addresses it. Feel free to PM me if you have questions.

Hang in there. Dysautonomia is tough but getting down to what is causing your symptoms is really important and it sounds like you are headed in the right direction by wanting a better diagnosis.

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