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hi all,

just wondering if you have this symptom, i twitch, i mean my neck jerks, eyes blink super duper fast, legs/arms do fast twitches, and then i have the whole body shaking, which i must say i have no way of knowing i do it unless my mom witnesses it or my dad. plus i do these blank stares...

any ideas? i mean this is getting very annoying and i want to know if this isn't all POTS? B)


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yeh i use to twitch (still do occasionally) .. i found magnesium suppliments helped as did enoz (ok i realise that sounds crazy but i sweat enoz helps with a lot of things including twitching and migranes)

I would check with a dr though as it may not be pots B)

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Hi. I am very familiar with the blanks stares! Or I as I also call them locked stares. They last for seconds and I am sure have lasted nevr lasted longer than a minute. One of my Doctors said it was a type of minor seisure.

As for the twitching it usually means i need more magnesium. I also get really bad calf and feet cramps and for me that is a sign of love potassium. I know this really ***** and can be scary. Especially when it feels like it will not stop. it is more annoying to me than any thing.




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  • 3 weeks later...


I just started to have this happen to me... did you find anything out about it... I'm kinda scard and I don't know if I should talk to my doctors about it or just ignor it. And since the last one I'm kinda just shaking inside. Like it just not going away. I just don't want to be told it's all in my head and nothing wrong. When it so scary.


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I have fasciculations constantly from my hips down, unless i take potassium. Then they improve drastically. I haven't magnesium because the K+ works well and I know it's low from blood work...I get tremors in my hands and arms and they become very stiff, so that I have trouble walking, but seizures have been ruled out.

Everyone says I go blank just before I faint, but I haven't seen it, so don't know. My hubs calls me bobble head all the time. So, yea I guess I get all that stuff.

But if it's new, you need to get it checked out and don't assume it's POTS. morgan

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Hi luckygoat,

I do get twitches occasionally also. It's much more noticeable during the evenings throughout the night but it does happen. I would be sitting down on the sofa watching tv, and i could literally see part of thigh twitch and quiver....it is soo bizarre. The twitching happens mostly on my thigh/knee area, but it also affects my face, arm, feet, hand, and even stomach! At first I was like this isn't normal...but now i just try to live with it. I defintiely think it's one of those wierd symptoms associated with POTS..but I just wanted to say that I can relate!

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  • 5 years later...

I twitch also. I have autoimmune dysautonomia. (I was positive for the alpha-3 ganglionic acetylcholine receptor antibody). I tested negative for potassium channel antobodies (which are known to cause twitching). But there are many antibodies that have not been identified yet, so the problem could still be due to such antibodies.

Have you had the Mayo Clinic Autoimmune Dysautonomia Evaluation? It is a simple blood test which picks up about half the cases of autoimmune dysautonomia.




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Babis - This is the test I am attempting to get. Once you were diagnosed with autoimmune dysautonomia what treatment did you get?


I visited Dr Andrew McKeon at Mayo Clinic neuroimmunology, and he recommended IVIg (0.4 g / kg of body weight / day) for 5 days and then once a week for 5 weeks. Then, continue long term with immunosupressants such as azathiopine or cellcept (these are nasty drugs by the way).

I am in the hospital right now, and just finished my second day of IVIg.

By the way, an article by Vernino (who first discovered the alpha-3 ganglionic AchR autoantibodies) mentions:

"If, on the other hand, the patient has autonomic overactivity (hyperhidrosis, tachycardia) associated with muscle stiffness and spontaneous muscle twitching, one may consider a diagnosis of autoimmune neuromyotonia or Morvan syndrome"

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I twitch like a drug addict!! :P only sometimes, when im tired and when I sleep I can get full body jerks enough to wake both me and my husband out of our sleep!!

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Can you explain autoimmune dystautonomia? I couldnt find a lot about it. thanks!

HI Dani,

Some of it is summarized in this presentation.

Basically autoimmune dysautonomia is dysautonomia caused by autoantibodies that mistakenly target some part of the autonomic nervous system. The Mayo Clinic Autoimmune Dysautonomia Evaluation is a simple blood test that picks up around 50% of cases of autoimmune dysautonomia. One key point is there is another 50% of cases that do not show autoantibodies in this test, and yet they still respond to immunotherapy. This means that there are autoantibodies agains the autonomic nervous system that are not yet known.

If you got dysautonomia after vaccination, infection, or if there is autoimmunity in your family, then it is quite likely that it is autoimmune.

The most common form of autoimmune dysautonomia is autoimmune autonomic ganglionopathy. This is mediated by alpha-3 ganglionic acetylcholine receptor autoantibodies, which target the receptor on the membrane of autonomic ganglia. A paper by McKeon et al and another one by Sandroni and Low are quite informative.

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Wow, Babis, thank you so much for that information! I'm new to this forum (and the diagnosis) and don't know much about it, but I have very high Ebstein Barr and CMV antibody levels & recurrent mono, so this sounds so much like me!

Again, thank you so much for this information! I have tears in my eyes at the prospect of finally getting some answers about what's been going on with me for the past two years and being able to target my treatment a bit better!!!

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Wow, Babis, thank you so much for that information! I'm new to this forum (and the diagnosis) and don't know much about it, but I have very high Ebstein Barr and CMV antibody levels & recurrent mono, so this sounds so much like me!

Again, thank you so much for this information! I have tears in my eyes at the prospect of finally getting some answers about what's been going on with me for the past two years and being able to target my treatment a bit better!!!

You are totally welcome! I really know how you feel... I hope this may help you and a few others...

I might add that thorough screening for autoimmunity is important and should be done routinely and early in POTS or NCS patients, for two reasons. First, early immunotherapy correlates with better outcome. Second, 30% of seropositive cases are associated with cancer rather than infection, and curing the malignancy may stop dysautonomia in addition to saving one's life.

Unfortunately, the (89904) Autoimmune Dysautonomia Evaluation is performed routinely only at Mayo Clinic, while most other physicians do not order this blood test routinely, or even refuse to order it when asked. (All my doctors in Wisconsin kept refusing to order it; I had to doctor-shop for a year until an epileptologist ordered a similar test (83380); then I had to show my dysautonomia doctors the positive result and the paper by McKeon et al discussing cancer in order to wake them up, at which point they referred me to Mayo.)

Anyway, if your doctor cannot order this test, he should probably be able to order some more common ones:

(83380) Paraneoplastic Autoantibody Evaluation

(81596) Glutamic Acid Decarboxylase (GAD65) Antibody Assay

This combination covers 89904. Of course, there are many others, such as Sjorgen antibodies, anti-mitochondrial antibodies, coeliac disease antibodies etc, that are related to POTS and should be part of routine screening. One should also be checking for Anti-Pituitary and Anti-Hypothalamic Autoantibodies (APA & AHA) if there are endocrine problems in the pituitary-hypothalamus axis, since such problems can worsen POTS.

You must push yourself through the system and ask your doctor "what other tests can we do to find out what is causing this?"

If he is not willing or knowledgeable enough to order thorough testing, I would suggest not wasting time like I did. If you could get a referal from you insurance and doctors, the best thing to do might be to try as soon as possible to get an appointment with Dr Andrew McKeon or Dr Sean Pittock or Dr Paola Sandroni (Mayo) or Dr Steven Vernino (Texas), since these are some of the few neuroimmunologists with experience in diagnosing and treating autoimmune dysautonomia. I have heard some positive and some mediocre comments about Mayo Clinic. I was warned by some doctors that I might spend $15000 and come back with nothing to help me, except advise to drink salt and water. But in my case, insurance authorized the visit, and I must say that the Mayo neuroimmunologists and radiologists lived up to the hype. My brain MRI & PET scans had been interpreted as normal, but the Mayo radiologists analyzed them with special software and found many crucial things that had been missed before...

Anyway, I guess for you the relevant question might be, if the Epstein Barr, CMV and mono infections are active, then is immunosupression contraindicated? On the other hand, IVIG is not immunosupression, and might help with infections as well as autoimmune disease (but is really expensive and requires infusion). So would it be indicated for you? These are questions for your doctors to answer...

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  • 1 month later...

Babis, have you found any articles that support the use of IVIG in the treatment of autoimmune disautonomia?

There are hundreds of articles out there, especially on AAG (autoimmune autonomic ganglionopathy). Here are a few articles discussing immunotherapy:

Ganglionic acetylcholine receptor autoantibody: oncological, neurological, and serological accompaniments. (Table 4)

Immunotherapy for autoimmune autonomic ganglionopathy.

Efficacy of immunotherapy in seropositive and seronegative putative autoimmune autonomic ganglionopathy.

Recent advances in autoimmune autonomic ganglionopathy.

Combined immunomodulatory therapy in autoimmune autonomic ganglionopathy.

Autoimmune autonomic ganglionopathy with Sjögren's syndrome: significance of ganglionic acetylcholine receptor antibody and therapeutic approach.

Anti-neuronal antibodies in acute pandysautonomia.

Long-term treatment with rituximab of autoimmune autonomic ganglionopathy in a patient with lymphoma.

Autoimmune channelopathies: well-established and emerging immunotherapy-responsive diseases of the peripheral and central nervous systems.

Coexistent autoimmune autonomic ganglionopathy and myasthenia gravis associated with non-small-cell lung cancer.

Autoimmune autonomic ganglionopathy with late-onset encephalopathy.

Autoimmune Autonomic Ganglionopathy

Acute pandysautonomia--restitutio ad integrum by high prednisolone therapy.

Other autonomic neuropathies associated with ganglionic antibody.

The spectrum of immune-mediated autonomic neuropathies: insights from the clinicopathological features

Finally, this is not immunotherapy, but a symptomatic therapy that increases adrenergic tone (used for 20 years in Asia, still in clinical trials in Western countries):


You can find more articles by tracing the citations. Unfortunately, most articles are recent, and most physicians live in the Medieval epoch. Even some dysautonomia 'experts' I have seen are not up to date. But the subject is a matter of active research and awareness will inevitably increase in the future.

It is important to realize that:

-60% of cases of AAG respond to immunotherapy

-Many antibody-negative cases also respond to immunotherapy

-In general, neuropathies mediated by antibodies targeting receptors on the nerve cell membrane (such as AAG) tend to respond better to immunotherapy compared to neuropathies mediated by antibodies against nerve cells themselves.

-Early immunotherapy is associated with better outcome.

So wasting time with non-knowledgeable doctors is a 'luxury' that many of us cannot afford. I wasted a year hoping to get help from local physicians at Columbia St Mary's and the Medical College of Wisconsin and got very little out of it (not only did they deny immunotherapy, they denied even testing for ganglionic antibodies). Now I wish I had gone to one of the authors of the above articles, such as the Mayo Clinic Neuroimmunologists, from the very beginning.

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For those of you who twitch periodically, do you have pain after the twitches stop? If so what do you take?

My twitches came roaring back recently. First with tremors and then twitching. Now the pain in my left leg is so severe it is difficult to walk.

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Yes - and when extremely dizzy I find it more so. Body jerks. when standing my right leg shakes also some times.

Had me worried too but think it's all part of it.

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