[jaynurse05]

This is my first visit to the neuropathy forum. I have been spending most of my time on the lupus or myasthenia gravis forum. I find myself venturing off the beaten path because I honestly don't know what I have and figured someone here might see my story and be able to give me some suggestions. So here is my story... sorry for the length.
I have been a frequent flyer at my doc office for about 10 years. I have IBS, treatment resistant depression, unknown rashes (ezema), insomnia, muscle pain, swollen lymph nodes and tonsils, etc... I have a very understanding doctor who pampers me, I think a little too much sometimes.
In mid nov 2008, the sole of my foot and my 2nd/3rd toes went numb on both feet, right was worse. I was in PT for back injury/hip surgery and figured it was back related. Did some traction which seemed to help. During this time, in Dec my hands started falling asleep while I was sleeping. Didn't bother me too much until the pain started when they would wake up. THIS was excruciating. I would be crying on the floor during this time. Eventually over the next month, my hands had constant pins/needles, burning, pain and lack of sensation on my first three fingers of both hands. During this time, I noted a few other problems. I was having a bad problem with urinary hesitancy, hyperreflexia (so bad I could even tap my inner elbows and my legs would kick), significant weakness. This was intensified for about two days when I also had back arching, stiff gait and Hypertension. I was also dizzy during those really bad couple of days. Oh, yeah then there was the edema. I had significant (2+) pitting edema (swelling) in my legs and general swelling everywhere else. Also during these two months I had such bad dry eye that I damaged my corneas. These were really good times!
Well, I obviously went to my primary. She put me on gabapentin, bumex, percocet, flomax and voltorin. These medications work decently to keep the symptoms at bay. She referred me to a neurologist and a urologist. I on the side saw an allergist. By the time I saw the urologist, the bladder issue had resolved and he gave me a clean bill of health. Next was the allergist. He recommended the neurologist run ANA and DSDNA. Went to neurologist who ran those two test along with number of others.
Well, something came back abnormal... actually several somethings. I had antibodies to acetylcholine receptors which is strongly indicative of myasthenia gravis. This was a real surprise to both of us because this condition has nothing to do with most of the symptoms I came in for. Further tests were a ct of my chest showing I had an enlarged thymus (consistent with MG) but the Single fiber emg was negative. (SFEMG is also just as strongly indicative of not having MG) So, I am clueless right now about the MG.
The only other abnormal test was another stumper. My ana was 1:10). Yea, referred on to the rheumatologist now. This doc was just sure this test is an error because these two test contraindicate each other. Redo the tests along with a ton others and get the same abnormality except my ds DNA was 1:80 this time. During my initial apt, he did say I obviously have some kind of autoimmune condition, almost ready to diagnose MCTD at least, if not SLE. He also said I have fibromyalgia and strongly suspected sjorgeans syndrome. Also, other interesting labs in the past two years have been elevated immunoglobbulins, low rbc, wbc, platelets (occ) and increased Platelet volume.
At this time, my main complaint the the neuropathy. The gabapentin controls the pain decently but the numbness is a real hazard for my profession as a nurse. Swelling is still a significant issue. If this helps at all, NSAIDS seem to help with numbness part???
I guess I just really don't understand what is going on. I have at least two chronic, life altering disease (MG and SLE) that I have had tests come back, one stating with almost absolute certainty that I have it and another test saying with the same degree of certainty that I don't have it. And what makes things worse is that it takes FOREVER to get stuff scheduled and then to make follow-ups. It is driving me bonkers! Any help, advise or suggestions would be greatly appreciated! Again, sorry about the length.