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Neuropathy after surgery

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.
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Avatar universal
A related discussion, HELP: was started.
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Avatar universal
I went through pretty much the same thing after knee surgery - piriformis like syndrome on both sides then the tingling, burning in hands, feet, hips and quads. I have a lot of symptoms similar to Lyme Disease, but my Igenex tests that I sent to the U.S. (I'm Canadian) came back Neg.
My neurologist put me on Elavil low dose to help with the pain but he also has suggested that my issues are "psychological" from stress. Not true, but it seems when he can't find an answer he resorts to blaming it on stress.
I can't help but wonder if the surgery (with a General anesthetic) is somehow related to the peripheral neuropathy that started 3 months after surgery. I also wonder if it's chronic Lyme, which apparently does not always show up on blood work. But I won't be able to convince my GP or neurologist of that since my blood work came back Negative.
Hope you have better luck in finding the cause!
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351246 tn?1379682132
MEDICAL PROFESSIONAL
Hi!

I am sorry to hear that you have any symptoms and no diagnosis. It is very difficult to diagnose such conditions on net. I will however, try and provide some suggestions.

Since you have upper right quadrant pain, you could be suffering from gut or liver or gall bladder infection of inflammation.

Crohn’s disease and ulcerative colitis can cause peripheral neuropathy like symptoms which appear to be of demyelinating type. It is often thought to be associated with vitamin B12 or folate deficiency and hence this should be looked for.

Ulcerative colitis is diagnosed through colonoscopy and Crohn’s is best diagnosed through video encapsule endoscopy. Both these conditions can affect the muscles and myo-neuronal junctions (between muscles and nerves) and hence you can have muscle aches, pains and weakness.

Infection with Campylobacter jejuni has also been linked to peripheral neuropathy like symptoms.

Normal gallbladder ejection fraction (passage of tracer from gall bladder to small intestine) is between 35-70%. If there is low ejection fraction then this may indicate chronic cholecystitis. This should be considered as the cause of recurrent upper quantrant pain, though it may not be related to peripheral neuropathy.

Other causes of peripheral neuropathy like diabetes, Lyme’s, lupus and other autoimmune disorders, electrolyte imbalance, and thyroid disorders should be investigated through appropriate tests.

I sincerely hope you will find this information useful in your discussion with your doctor.  Along with a neurologist try and consult a gastroenterologist as well.

Hope you get well soon! Good Luck and take care!
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