Finally a diagnosis! Autoimmune Autonomic Neuropathy

[tkimber]

We were so excited to finally end our four years of testing at Mayo and at our local hospitals.  Yay!  Now, it's just about dealing with it.  Dr. Goodman at Scottsdale was very helpful and very very patient with me during all the testing and all of my fears. I'm so very thankful to him! And of course to God for giving me strength!!  Before all of this, I was diagnosed with petite epilepsy as a young girl and gastroparesis. Have always had serious headaches and had something that mimics dysreflexia episodes (this is what the neurologist here calls them), but don't have a spinal injury, dysreflexia episodes every 5 years or so.  Nothing that really took me down for too long, except a day or so. I was a busy mom, bicyclist, dancing, writing, bringing-home-the-bacon, traveling fun girl!  However, after my lung infection in 2006 this situation progressed into headaches, heat intolerance, gastro paresis became worse, nausea, daily dizziness, terrible memory loss, thyroid issues, hypotensive blood pressure to hypertensive blood pressure, medication intolerance, lots of terrible pain, arms and hands going completely numb and tingly at night, some very serious fatigue, just so sick and mostly mentally disappointed in how my life had changed.  It took years to find a doctor who could even begin to understand all of this. And was given antidepressants by all who could not figure it out.  I believe most of the doctors in Vegas have a motto, "If I can't figure this out....you must be crazy.  Here take this antidepressant."  :)  Terrible experience.  It took over 17 doctors and 18 months here to figure out I had a lung infection and toxic/thyroid & cancer.  blah blah blah.  Anyhow, Dr. Goodman, Mayo neurologist has been working with me since August of last year-2010.  It took several months for a definite diagnosis, only because our health insurance doesn't cover Mayo and paid as we went.  Anyow, so now that I have this diagnosis, I am finding that there isn't a whole lot of information on Autoimmune Autonomic Neuropathy.  But what I was told was that my nerves become inflammed everytime I have a migraine, a cold or flu, or get too hot or too full, etc. And my inflammed nerves cause my entire body to over react-causing my body to go into a hyper state.  Basically not staying in homeostasis is causing my nerves to become inflammed and damaged.  My brain and other organs involved are getting the wrong signals, so of course we all know, you end up with a hodge podge of symptoms and nothing works right.  But at least I know what it is.  This forum has been so wondeful in helping me get through all the confusion.  Thanks to all!!!  It is a sigh of relief. Not the best news, but it could always be worse.  

And if anyone has any extra information on this I would love to hear it.  I was reading about the benefits of Alpha Lipoic Acid to help the nerves.  Was thinking of trying it slowly.  Doc is so leary of giving me any medication, especially since a half teaspoon of Mylanta-antacid sends me to the ER.  But he wants me to try a tiny dose something that starts with a Clonidine.  Says, my symptoms are different than some and my immune system if over acting.  Waiting for courage to try it.  Anyhow, for now I just want to rest and get rid of this headache.  :) But will take any extra words of advice or knowledge or experieces.   Again, thanks to all for the great support.  
Love and health to everyone!!!

[tkimber]

Hi Surgi and Beema,
I had the toxic thyroid surgically removed.  That was making me seriously ill for a few years. A few days after it was out I started to gain back the 17 pounds it had caused me to lose and I was already a slim person, so it was a good thing. Am on thyroid medication now. And the Mylanta and all the other drug reactions- Mayo Doctor says they are doing a study on P cell 54 (hope I have that right) that is causing many people to have medication sensitivities. Something connected to neurology.  He said it would be interesting to have me in the study, but I just can't take anything-not even baby asprin or pepto bismol, children's claritin etc..  So I'm very nervous about taking the new the medicine.  And Beema, so glad you heard good things about Clonidine. I just need to get up the nerve to take it.  :)

[beema36]

I am so glad you are getting some answers. I am.hearing good things about clonodine. Hope it helps you.
Beema

[LivingInHope]

Glad you finally have more clarity as to the nature of your illness.  What are they doing for the toxic thyroid?  Why does Mylanta send you to the ER?