Any More Information On Pandysautonomia

[Jordan5815]

in my diagnosis from the autonomic lab i was told I have "Mild Pan-Dysautonomia" aka mild version of pandysautonomia I don't know if I had the anti body test ACHR Antibodies and it came up negative I do not have it. Doc said it is probaly genetic. but no one else has it. only other medical condition I have is acid reflux which was taken care of with surgery and a mild heart murmur which happened from VSD after it closed up on it's own. I'm told I'm perfect from Cardiologists and GI Docs. I don't know if I have the acute, the pure, or the chronic progressive one. I have no idea how to find out. I keep trying to get access to my ans lab report so I can have another doc review it but they somehow lost the documents.

Basically I don't know if it's progressing because I'm on meds. Somedays are better then others. Can't gain weight, I'm never hungry but I force myself to eat. I have problems holding onto water so I started taking salt tabs.

But what is bothering me is the lack of resources on the internet for it. I am stuck and don't know what to do. I always assume the worst do people die from pandysautonomia? I mean I do not know what to expect or what to do about it. Don't got much money anymore because I went through it all. No Mayo clinic for me. I really don't even completely know what pandysautonomia is because all I read about is the ACHR antibody which I don't have. Would be nice to have it because then I could be treated and get better but don't know.

One of those frustrating nights, getting ready to see my new neurologists in the next 2 weeks and don't even know if this doctor knows anything about autonomic issues

Is there some magical site that I have not seen that you may have seen or some knowledge you have on the subject because I don't know what to expect anymore.

Thanks,

- John

[janelle]

Yes, i have it. Never heard of it being genetic though, it starts as an acute or subacute onset with a monophasic phase then supposedly spontaneous or mostly incomplete recovery. They say it is autoimmune or idiopathic i think.

I have had IVIG which is what they give and it is most beneficial i think in the early phase of illness, my therapy started after 19 months of onset, but it hasn't worked as well as hoped but i think it has a little. What are your symptoms? How long have you had it? Are they giving you any therapy?

Pandygirl

[potsgirl]

Hi John~

I've recently had a CT scan of my brain that shows moderate volume loss and lesions in my white matter, along with increasing tingling/weakness/severe fatigue in my arms and legs with multiple other symptoms, including weight loss and not being hungry. Early predictions are either MS, amyloidosis, or pandysautonomia. I need to have a spinal tap and other tests completed to come up with a solid diagnosis. What testing did they do to come to your diagnosis?

I've had some luck on the Internet regarding the disease. It's thought to be a form of Guillain-Barre, and you can find a lot on that. Did you have a CT scan/MRI? I could only have the CT without contrast because I have a pacemaker and I'm allergic to contrast dye. I haven't heard of pandysautonomia being genetic either, but rather idiopathic or autoimmune, like Pandygirl wrote. Some web sites to try (type in pandysautonomia into Goggle):

ncbi.nlm.nih.gov Paper on Pure Pan-dysautonomia from the National Institute of Health

emedicine.com From WebMD, all about the disease

medlink.com

Good luck, and it sounds like Pandygirl can give us insight, too. Also, Ericka is currently being treated for sudden paralysis in her legs, and they're testing her for P., too. She once had Guillain-Barre.

Take care,

Jana

[Rachel Cox]

Hi, I have been trying to find out about it too, after a neurologist told me I have it. He said it was progressive and there was nothing they could do to fix it, just management of my symptoms. I would love love love it if someone could point me in the direction of information which says it is self-limiting or can resolve itself!!!

Subsequently my doc has told me that IVIG therapy is only helpful for people who have a sudden onset. I have been having symptoms (which I was told in my original diagnosis were POTS)... since I was 11, so he said it won't help me. Sad about that. Just recently he has suggested maybe going on corticosteroids? Anyone else tried that?