Babis

I have had POTS for a year, and was recently diagnosed with AAG. I was positive for the alpha-3 ganglionic acetylcholine receptor autoantibody. There is a test called "Mayo Clinic Autoimmune Dysautonomia Evaluation"

http://www.mayomedicallaboratories.com/articles/hottopics/2011/02-auto-dys-eval/index.html

but most of my doctors refused to order it. I had to see 10 specialists before someone agreed to order the test, and when it was finally performed the result was positive. I then visited the Mayo Clinic neuroimmunology department, and they did a very good job, catching many things my previous doctors had missed. They also recommended immunotherapy, with IVIg or steroids, followed by azathiopine or CellCept. I am in a hospital in Germany right now and just finished my second day of IVIg (0.4 g / kg / day). I pray that it works; if not I will need plasma exchange or immunosupressants.

Julie,

My best answer is I don't know if your weakness and wobbling are due to POTS or chiari. But I will share my experience.

When I first started to get sick, I went through a three-month period when I would have strange weakness, where like you, I would have trouble picking even little things up, like coffee cups, and dropping things and having trouble with my hand movements (my handwriting changed to smaller letters, I had trouble with buttoning shirts, etc.). This lasted consistently for these three months; these were not spells. I seriously thought I had ALS at one point. I was also getting fasciculations - little muscle twitches - and was feeling so weak and tired.

During this process I lost a ton of weight and realized I was losing muscle mass, which seemed to be causing this "weakness."

I don't know if this is POTS or not, but it happened to me. Wish I could say I have recovered, but I can only say it has reached a plateau for me, and I have residual weakness and an inability to regain any muscle. But I do not "feel" as weak as I used to. Before I used to literally feel like I was dragging around a pile of bricks tied to each of my limbs. Now, when I go to pick up something heavy, I actually can't. So my perceived weakness that I had before has been replaced by real weakness. Does that make sense?

I don't know if this is the kind of info you're looking for, but thought I'd share.

Amy

Have you had your growth hormone / IGF1 checked?

Growth hormone deficiency can cause muscle loss, decreased cardiac output and sympathetic overactivity. The latter is one of the main causes of POTS.

(I was told this by a very sharp and well-informed neurology professor in Europe; most doctors are not aware of this connection unfortunately).

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.

http://en.wikipedia.org/wiki/Benign_fasciculation_syndrome

http://www.mayomedic...eval/index.html

http://www.mayomedic...ysautonomia.pdf

Propranolol, even at a low dose, lowered my BP and made me weak and dizzy. This happened because it is non-selective beta blocker: it blocks all beta receptors.

So they switched me to a very low dose of Metoprolol Tartrate (1/4 of a 25 mg tablet twice a day). This is a selective beta 1 receptor blocker, and it worked quite well. It stops my heart from jumping around and does not lower my BP.