Update on Nervous1 - Dysautonomia (Not formal DX)
 

Hello All,

I completed my tilt table test yesterday and would have had more fun sticking bamboo shoots under my fingernails. I felt like I was going to die. I lost all awareness and passed out. Took over an hour before I could leave.
The test produced syncope
Prodromal symptoms were reproduced
Test suggests that patient's symptoms are due to Vasodepressor syndrome

I am due to begin a 5 hour treatment of IVIG beginning on the 21st of this month. The cardiologist did not prescribe anything for the Vasodepressor syndrome due to the fact that I am beginning IVIG. I read somewhere that the IVIG could help with the Vasodepressor syndrome.
That would be great to kill two birds with one stone, just as long as I am not one of them ;)

I will give another update after the IVIG treatment. Hopefully I will tolerate it.

On the brighter side, I have been able to walk about a mile a day or more with breaks. I have also been lifting light weights again. Boy does this help the body and brain :) My feet sometimes do not even hurt. I attribute this to the supplements, gluten free diet light exercise and compression socks. Never give up, I admit I was ready!

I have no plans to quit fighting this horrible disease and it really helps to know who you are in the ring with!

It is terrible for sure. Yes, the supplements make a huge difference. Did you find out the cause? Mine is Autonomic Neuropathy. So I know to concentrate on healing the nerves. So much better now.

I have the presence of autoimmune D in my body, and so it is believed that my system is mistakenly attacking my nerves.
This is what I tested positive for @ .09 nmol/L
The most commonly encountered autoantibody marker of autoimmune dysautonomia is the neuronal ganglionic alpha-3- (acetylcholine receptor) autoantibody. This autoantibody to date is the only proven effector of autoimmune dysautonomia. A direct relationship has been demonstrated between antibody titer and severity of dysautonomia in both alpha-3-AChR-immunized animals and patients with autoimmune dysautonomia. Patients with high alpha-3-AChR autoantibody values (>1.0 nmol/L) generally have profound pandys autonomia. Dysautonomic patients with lower alpha-3-AChR autoantibody values (0.03-0.99 nmol/L) have limited dysautonomia.