Autoimmune Pan Dysautonmia

[cyn2803192]

Hello,  I am a 33 year old woman who was fit and healthy 18 months ago. 6 months after my daughter was born,  I started to experience increased bowel movements and weight loss, up to 20lbs in 1 month. I then started vomiting and my stomach stopped (gastro-paresis).  My gall bladder slowed and had to be removed.  I have numbness and tingling in my hands and feet particulary at night. I also have a burning sensation on my back.  I have flushing on my face and if I drink any alcohol I go red.  I experience sporadic itching, muscle spasms, insomnia and muscle aches and pains (particulary in my back and neck).  I have extremely dry skin and a constant thirst.  My memory is poor but can vary from day to day.  I also heave leakage of urine on occasion. I have been diagnoised with POTS, Postural Orthastatic Tackycardia Syndrome after the tilt table test in Nebraska.

My MRI and CT scan was clear as was the EMG. My CSF showed 3 Oligocolonial bands but nothing else. Colonoscopy normal, Endoscopy normal and all blood work basically normal.  They cant see evidence of lupus or MS.

My Neurologist has diagnosed me with Autoimmune Pan Dysautonomia.  Could anything else cause this large range of symptoms?  Is there any treatment?  Will I ever be normal again?

Concerned lou

[Bmn]

I have been asking myself the same question for over three years as my life slow slips away from my hands. I have all that you say and maybe more. I cry my pain is so bad. I have the thirst too, but will just stand it if I do not have to go down the stairs. I am actually a therapist and have lost the ability to paint, play music, bike, run, fly fish, have sex with my wife without major ado. I am still in doubt. I even went through one of the more recognized treatments and I KNOW that I was worse and I have continued to get worse. I am scare for my spouse; who has been so incredible brave and supportive. What will happen with her. After the first heart attack the insurance company treats you like you have the plague. I cannot provide and have to take my wife to all the many, many appointments. Don't get me wrong, I am amazed and grateful she is there, but she is there because I have lost the ability to consolidate many memories and sometimes do not understand what is even going on. I actually DO have fairly good pain control, if all the meds is the consideration, but it is only a matter of time if this thing gets worse that I will face with this with almost no armor to speak of, metaphorically. I say all this from the "other" side of the chair. I hope that misery DOES love company. I am not that much older (I would like to think...36??? :-0) and just saw your post and felt compelled to respond. I hope that you find good people for your pain. Be prepared for lots of explaining and quickly getting tired of telling doctors what you already know. I worked within the medical community and I can say that many do more than best, but because of malpractice, rules, restrictions, and hand tying, many have lost the proverbial fight and opt for basic or standard treatment. Things like this go on every day. And, we are the ones making the system work as we seek out our own panacea and peace. Godspeed and always feel welcome in my email
:-) Peace, or semblance of it... -b
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