Possible Autonomic Ganglionopathy?

[Raisin]

Hi everyone! I got the results of a thermoregulatory sweat test which says possible autonomic ganglionopathy. I see my neurologist tomorrow. I just wondered if anyone knows if all autonomic ganglionopathy is autoimmune in nature or does that encompass other things as well? I googled (lol) but only see autoimmune related responses. I am trying to appear somewhat educated so that I can ask the right questions for myself. Thanks! Boy, this can get rather complicated, can't it?!

[gjensen]

There are a number of conditions that can interfere with your sweat response. Everything about any of this is certainly complicated.

Wish you well on your visit, and let us know how it goes.

[andybonse]

well an abnormal thermo doesnt mean AAG at all, it could just be small fibre neuropathy etc.

[Raisin]

Thanks andybonse! Well the appt. was kinda frustrating as my neurologist said he is ordering a skin biopsy and he ordered a blood test I think for paraneoplastic syndrome but he seemed to be mentioning anxiety alot today. For example...you get out of breath because you are anxious to be in a crowd, etc. I don't get anxious in a crowd and I don't get out of breath from anxiety so I felt dismissed. I thought he was on the same page as me re the Dysautonomia but now I am questioning this thought. Haruuuummmph.

[looneymom]

Your doctor is moving in the right direction with the testing. These test can rule out some more serious conditions. When a doctor can't seem to find anything that brings clear meaning to your medical condition, they tend to bring up anxiety. Hang in there. This new testing may provide the answers you need.

Rachel

[Raisin]

Thanks Rachel. Yes, I think we are getting to the bottom of this. My frustration ,which I didn't really explain very well ,was that the neurologist said he was ordering the tests only because the autonomic doc thought he should and he seemed dismissive. In the past, he always seemed concerned and "on the same page" as me. I think I am actually getting more impatient as we get closer to a final diagnosis (or hope thereof). I have to Maintain my peace and chug along!

[E Soskis]

If the thought is that you really have AAG, you need the antibody test - a biopsy won't give you AAG results - if a tumor is suspected, you need a CT scan with contrast of the chest - have the antibody test run by Mayo in Rochester so the results will be accepted at any major facility in which you may have to go for a consultation - shortness of breath is not necessarily related to "anxiety" - dysautonomia is known to cause dyspnea and SOB - the mechanism is lack of blood flow to the chest muscles which can cause tightness, constrictive feeling and SOB (shortness of breath) - especially when your blood pressure is very low - keep digging for answers - physicians are very quick to put all symptoms off on psychiatric conditions and anxiety - it too me years of searching before I received the diagnosis of AAG - and still, it is so rare that most physicians have never even heard of it let alone are familiar with it - I finally have the right physician and am receiving appropriate treatment which is allowing me to keep working and functioning - don't give up!

[Raisin]

Thank you for answering E Soskis! I did look at my lab test order sheet and it says neosin neuro paraneo. ? I tried to google that (lol) but can't figure out if that is an antibody test plus a neoplastic test or exactly what it is. I am sure it is abbreviations but, as you said, when you get into the more rarer tests and diagnosis, the googling tends to dry up a bit more! I do go to the Cleveland Clinic and I am aware of a neurologist at the main campus that I may end up seeing if I don't feel my clinic satellite doc is willing to cover all bases. It was the results of my other autonomic tests and my thermoregulatory sweat test (anhydrosis of distal and hypohydrosis of central) that led them to recommend to my current Neuro doc to test for neoplastic and antibodies for ganglionopathy. Good news is that I already had the skin biopsy as they had a cancellation. I sure appreciate your knowledge of proceeding further.

As for the shortness of breath, I told him I know when I am anxious and that the two do not go hand in hand. He seemed distracted and as if he wasn't really there this visit. I will give him another chance as I am extremely grateful for his knowledge and assistance up to this point but we have to fight to get all the bases covered so that we might feel better, huh. I do have lowered blood volume so your explanation makes complete sense. Also, I read that low blood volume can cause anxiety! Wow, huh?!

[E Soskis]

Yes - low blood pressure is tough on the brain - when my pressure is extremely low, I feel terrible and probably am not pleasant to be around - you can't even think straight! The only thing I can think of related to your neoplasm blood test is that it is a tumor marker of some sort - some type of marker that would be elevated should there be a neurological tumor hiding out somewhere - I was told by my neurologists that the tumor would be in the chest and visible on CT scan. Thankfully, my scan was negative. I wish you all the best in your quest to find answers - just hang in there and keep plugging along....

[Raisin]

I'm glad to hear your scan was negative. I will make sure an antibody test is done if this doc didn't cover that base. I am soooo grateful that we can all share our experiences and knowledge. Perhaps we will all stumble upon a common, fixable link. Rock on!