Maiysa Posted November 15, 2011 Report Share Posted November 15, 2011 I was told I have autoimmune autonomic neuropathy a few months ago. But when I got my paper work in the mail, it doesn't say autoimmune. After talking to my doc at Mayo he says, he can't write it down as a definite diagnosis since no tests prove positive. So it's considered to have an autoimmune aspect and he also says I am having some unexplained issues that are yet to be discovered. I guess my husband and I are a bit confused. He was with me at the time of diagnosis and not sure how we missed it was a possibility. But anyhow, I'm back to idiopathic autonomic neuropathy. And am a bit bummed that some of the other issues aren't making sense. I also have orthostatic intolerance. Now, I have to go back to my primary, who thinks this is all non sense, and now tell her it's not autoimmune for sure. She says she has several patients who have this diagnosis and that it's not that big of a deal. She said, I'm just getting myself too nervous and causing the reactions myself. OOOOkay! I always say. So this will be interesting! Wish me luck and yes, I know I need to find a new doctor. But I can't drive most days and she is the only one close to me. This is basically a nightmare to get some doctors to take seriously. Quote Link to comment Share on other sites More sharing options...
Katybug Posted November 15, 2011 Report Share Posted November 15, 2011 Maiysa,Sorry your having a rough time with the doctors. I know that is one of the hardest parts of this disorder...the doctors! I wish I had something to offer you other than moral support. Hang in there...Katie Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted November 16, 2011 Report Share Posted November 16, 2011 I'm stuck in the idiopathic autonomic neuropathy category too. This last Dr. searched and searched for a cause (and I really give him credit for that), but didn't find one. What made the original Dr. say it was autoimmune - based on what? How does he know? Your Dr. thinks it's no big deal that your nerves are dead or damaged? The nerves that control all your vital bodily functions? Geez... What I did was look for a bunch of things that could cause SFN/autonomic neuropathy and was tested for all of them. You've probably done this. Something is damaging our nerves - the question is what. I'm still looking..... don't give up. Quote Link to comment Share on other sites More sharing options...
mwise Posted November 16, 2011 Report Share Posted November 16, 2011 I have Autonomic Neuropathy from an abnormal QSART and neural exam, which is idiopathic in nature. Dr. Shields did a battery of tests with the outcome idiopathic. We are focusing on treating the symptoms. That is good enough for me. I have Orthostatic Hypotension Dysautonomia.from a failed TTT. My blood pressure upon standing would drop to 60/40 and sometimes lower causing me to drop to the floor constantly. With the help of Mestinon, Midodrine and homeopathic treatments as listed in my header, my last blood pressure was 110/70 upon standing. I was so excited because I have never had a standing blood pressure above 100. My primary care doctor was shocked to find out what I had as he never heard of Dysautonomia. Dr. Shields and the internet is educating him on it, but I am being managed by Dr. Shields, who I like very much. Quote Link to comment Share on other sites More sharing options...
potsgirl Posted November 16, 2011 Report Share Posted November 16, 2011 mwise,It seems a little odd to me that your doctor has never heard of dysautonomia - it isn't that uncommon. I'm glad you like and trust your doctor, though.Maiysa,Do you mind me asking what the other 'odd' symptoms are? Hang in there... Quote Link to comment Share on other sites More sharing options...
mwise Posted November 16, 2011 Report Share Posted November 16, 2011 Potsgirl,You will appreciate this-my primary doctor happens to be my cousin. LOL. He actually called me when he had received information from Dr. Shields about me having Dysautonomia and ask me all about it because he never had anyone with it and that was the 1st time he had heard of it. Trust me, he now knows because I and Dr. Shields educated him well. Quote Link to comment Share on other sites More sharing options...
Maiysa Posted November 17, 2011 Author Report Share Posted November 17, 2011 Potsgirll! Hello!! These are my odd reactions...I am having severe black outs occasionally and my face turns blue or sometimes a gray white and I'm completely soaked as if I just got out of the pool within a few seconds and i feel as if I'm burning up....and it feels like death is around the corner. I saw myself in the mirror when they were putting me in the ice cold tub. It was so scary-with my wet hair I looked that girl from the ring and I'm not kidding. I scared myself! I was in and out of consciousness. When I came out of it the first thing I did was look in the mirror and was so happy to see color in my face! They almost lost me a few times at the hospital. My neuro here thinks it could be dysreflexia-she says it's possible to have it without spinal injury. I don't know. I don't think anyone knows. A few times my blood pressure was at 30 something. And sometimes I feel pressure in the back of my head at the occiput??? That's only happened a few times. And during these episodes I can't lift my upper limbs or talk, only intermittently. My spine hurts a lot and so do a lot of my tendons and ligaments. Now, my muscles are stiffening up terribley. It's the worst it's been in ages, but the iron has helped a little bit. Anyhow...that's the odd stuff. MRI and spinal tap showed nothing and I don't have seizures...except a few when the blood pressure dropped to low. They said it was from the low blood pressure. Also I my legs welt up if I walk for too long. Mayo said they are at a bit of a loss besides the autonomic neurpathy...with possible autoimmune aspect. Hmmmm... Okay talk soon! Quote Link to comment Share on other sites More sharing options...
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