Autoimmune Ganglionopathy

[Angelika_23]

Just got my doctor notes in the mail from Cleveland. This part was something I didn't hear while I was there.

"The appearance of symptoms post viral meningitis raises the question of an autoimmune ganglionopathy..."

I did a search on here, and on Google, and did not understand them. Can someone dumb it down for me please?

Thanks

Angela

[ajw4790]

Angela,

Hi! I am not an expert or very knowledgeable on this subject by any means, but I thought I would take a stab at it. Hopefully someone else can add in some more info for you.

I think what it is saying is that he believes that getting these symptoms after being sick with viral meningitis, that your immune system turned on itself (autoimmune). So, then your symptoms are more autoimmune in nature, rather than hyperadrenergic or small fiber neuropathy related. Instead the autoimmune reaction is occuring further up the chain at the ganglion level. Small fiber neuropathy is neuropathy that occurs distally or further from the body (hands and feet and works inward). With something like this the body is attacking itself closer to the spinal cord at the ganglion level (bundle of nerves coming in/out of the spinal cord). Some ganglia are purely autonomic.

This is where some people get the blood test for the AChR antibodies. This can tell if this is what is occuring, but is not necessarily always positive. (I think... so, it could be negative and they may still say this is what is going on). I think Mestinon is used some with people with this diagnosis. Also, IgG may also be used?

The one thing I read said that the autonomic autoimmune ganglionopathy is more or less an acquired immune system meditated form of autonomic failure. But, I am not sure that this is the same as Pure Autonomic Failure (PAF). But, I think overall the thought process is (I think) that the meningitis caused a reaction in your body. It is causing your body to attack itself. The main place that it is attacking is near the spinal cord at the ganglia. (The spinal cord and brain are covered in a layer known as the meninges, (hence, meningitis). Then, whatever is controled by the ganglia it is attacking is what is causing the symptoms.

I am having a hard time putting together words and thoughts so hopefully that makes some sense, and is accurate. Don't take it word for word, but as a possibility as to what he was getting at. I am sure he probably ordered all the blood tests and that he will be waiting to see what those say. This is one of the blood tests that goes to Mayo and normally takes 2 weeks to a month to get back. So, if you got some of your blood tests back this may have not been included yet. I am sure you can call them and ask them about it if you do not have another appmt. scheduled in the near future.

I hope that you find more answers on this soon!

[ramakentesh]

They are suggesting that it is possible your POTS - assuming that is what you have - has an autoimmune basis because of its arrived following an infection. (post viral partial dysautonomia)

A number of autoimmune and inflammatory reactions have been implicated - but are yet to be clinically demonstrated.

These include an autoimmune peripheral neuropathy where autoantibodies attack the nerves in the vasculature of the arms and legs and reduce their ability to generate norepinephrine or other vasoconstrictiors to vasoconstrict when upright, causing pooling in the legs and arms.

While the causes of small fiber neuropathy are unknown, an autoimmune process is suggested.

Do you have pooling in your legs?

[Babis]

It is explained here:

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