I am having symptoms of what I think could be autonomic neuropathy. It started a few weeks ago. I have blood pooling in my feet when I sit or stand, I get full after just a few bits of food and I have decreased sweating. I sweat when I exercise, but not all over my body. But if I'm in the heat, I don't sweat correctly. Plus I get the chills easily also. I am in the middle of getting some testing done, but don't see a neurologist until mid-August which worries me. I've read that if it is AN it is important to try to find a cause and treat it.

I was also recently tested with an antibody that is linked to mixed connective tissue disease, but I was not actually diagnosed with any autoimmune disease yet since my only symptom is Raynauds. I am wondering if I do have AN if it could be autoimmune related.

I have really low white blood count. My GP is re-running those again, plus other blood tests to check other things. I have a stomach emptying test in a week. The heart doc wouldn't do the tilt table test at this point, but did a echo and holter test both of which were "normal."

I am having a really hard time with dealing with the possibility of having this. I have health anxiety anyway, but I have been obsessing over this. I am so scared I will be disabled and a burden on my family.

Any encouragement would be great. I'm in a bad place.

Lor

Hi welcome to the boards though I am sorry for your struggles. I wish I had more to offer but will suggest a few things. One I would call everyday the neuro office you have an appt with in Aug and see if they have any cancelations. I have got into docs months early doing that. Has your gp discussed seeing a rheumatologist? What other blood work is your gp running? When we were ruling out conditions I had auto immune blood work done looking for things like lupus etc, B12 is an important one from many here, blood sugar, vitamin D,gluten.You mentioned stomach issues can you say more about that? More will come a long I am sure and give more advice on blood work cause I am not as knowledgable as many here. I understand your worry. I still have that issue but have gotten to a better degree with it. When I first came to this board I was in constant fear and worrying about the what ifs and future. I still do but I am more rational and am learning to focus on the day. I try to remind myself to not get ahead of myself and to get through each day in the best way I can. Hang in there and I hope you feel better and get some answers

I started out not having much of an appetite. Then I could eat small meals and feel ok. Now, I can barely eat anything and I feel super full. I have seen a rheumotologist and she can't diagnose me with mixed connective tissue disease because I don't have enough symptoms. She doesn't think that the symptoms I am currently having are related to an AI disease.

Are there any of you out there that have Autonomic Neuropathy that lead "normal" lives? I am so afraid of being disabled and not being able to work.

There are a few of us here that suffer from dysautonomia, either AN, POTS or some cases where it may not be too clear. I have suffered from a host of problems after having a mycoplasmic pneumonia almost 20 years ago. I also suffer from "connective tissue disease" (with Raunauds), fibromyalgia/CFS, and have been diagnosed with small fiber neuropathy through skin test. I also suffer from dysautonomia and am having testing done to see if a cause can be found. My neurologist feels it is inflammatory and related to the SFN. Gastroparesis often goes along for the ride. I had a real problem with it a year ago and manage it now.

Sometimes, there is no problem identified as the cause of these conditions. There may be an antibody responsible for an inflammatory autoimmune illness, but many times the 'antibody' cannot be identified. That is more-or-less where I am.

Key is managing the symptoms and that can take a great deal of experimentation with different meds.

I have started exercising every other day to see if it makes me feel better. Sometimes, I have a hard time getting off the couch because of how lousy and fatigued I feel. However, I am getting pis*ed about it all so I am exercising in the hope that it will at least make the flares shorter lived.

I wish you the best and remember, you are not alone.

Mere