I am the one who posted the bone pain question. I feel your pain.

Lets parcel this out. You have half your answer, though, don't you? Cant the Hashi's which is an autoimmune problem - be the "cause" of all this. I realize you are frustrated b/c all of your nerve studies (including biopsy?) are normal. Is that right?

I am a bit envious b/c I don't have the "cause" part yet or the "result" part yet! I have had an elevated IgM for 15 yrs and no one can tell me from what. I always show an anticardiolpin antibody IgM when I test and I have had reactivated epstein barr virus for the past two years (also an IgM) but no one can tell me for sure that those are what is causing my issue.

So, I am going to an immunologist mid NOvember hoping he/she will be able to say what is going on with me as well. I also have mitral valve prolapse (which needed open heart repair) and some hypermobility issues so I believe I have some undiagnosed connective tissue thing going on as well. My rheumy has me on Plaquenil just to see my response. Im okay with that, at least we are trying SOMETHING. Its only been a week.

I realize you probably had a pretty good workup, but it is essential that you get a serum and urine immunofixation/electrophoresis done with a serum light chain analysis to exclude some things. That will be very helpful to you to see where your immunoglobulins range etc. I have a slightly off kappa/lambda ratio which has me worried, although the dr not too concerned.

I really feel for you. The pain and sensations are horrible. Mine cycle through all my body but there was a long stretch this summer when I was getting the face burning along with trigeminal neuralgia symptoms and feeling like my cheeks were swollen and I was "teething" and eyebrow heaviness and eye burning.

I personally am not the type to stop trying to find answers - I am dogged - but that is not getting me anywhere. I have been to at least 30 drs in the past two years and no real answers. I have to say to myself at what point is this ruining me and becoming a fixation. Im depressed, Im scared, and my whole family is done with me b/c im so fixated. I just want to know what it is so I can go on. That's it. Just an answer. I even paid to get my entire body CT scanned when this first started, I was so sure they were missing something and irrationally, I still feel that today. I may not be the best person to counsel you know b/c I am still "in the muck" so to speak, and probably a good 6 weeks away from getting any real answers given the timing of my next few appointments.


And just so you know, I personally have had all negative EMGs too to date - I haven't had the nerve biopsy yet, so if mine is negative, Im in the same boat as you are....