I have neuropathy that started in the arms after appendicitis surgery. It was first diagnosed as carpal tunnel. Since then it spread to the back of the hands, then legs and face. After exercise, when i go to bed, all the muscles in my body are twitching. It is not glove/stocking pattern, it seems to go from top to bottom - the legs started as entrapment by the pyriformis muscle, then i stretched and seemed to get better, then changed and looked like entrapment in the ankle, then area around the knee got numb, now my quads tingle and burn).It's mostly symmetric, the left side usually starts first then the right side immediately follows a few days later.
The other predominant symptom that started at the same time as the hands is upper right quadrant abdominal pain, fullness and nausea and it's still going on. Initially diagnosed as IBS.
At the beginning i also had some joint/muscle pain which the doctors said its inflamed plantar fascia, but it's gone now.
I had numerous tests, most negative. The only positive ones were HIDA scan for gallbladder which showed a 19% ejection fraction and a EMG/NCV test which was abnormal, with the doctor noting that "might show demyelination".
Not enough criteria met for CIDP, and prednisone trial didn't really help.
The negative tests were - ANA (butterfly rash was diagnosed as dermamitosis), rheumatoid factor, Multiple sclerosis (2 brain mris), chron's disease ruled out with endoscopy/colonoscopy, HNPP genetic test negative, no diabetes, vitamin levels look ok.
At this point I'm lost, without a diagnosis I have no idea how to fight this. The next neurology appointment is 4 months away because they are booked all the time. They usually do a bunch of tests which come back negative.
Any advice on what to look for? I feel that the symptoms are all connected somehow, yet all my searches turn up nothing. This has been going on for 5 years and I'm frustrated as hell.