Originally Posted by Pyr2 (Post 1180959)

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....

Originally Posted by MAT52 (Post 1181894)

Sorry for late response enbloc. I was tested for Lyme with a lumbar puncture in January - I think it was called cryoglobulin - my neurologist had it done and it was negative. I would have been surprised if it had shown up positive. There are no deer or Lyme in the part of Scotland I've lived in for the past 26 years and I've never come into contact any tics as far as I know. The area of Scotland I've moved to,on the other hand, does have Lyme, although not on the same scale as in the States. My cousin who lives in France has it so I'm aware of the symptoms it can cause. Many thanks for the suggestion though it would make a lot of sense of my symptoms if I had it.

A leading immunology and rheumatology professor I met yesterday (he was giving a presentation to a small group of us with RA) said that he believes that the early stages of acute disease activity can cause subtle erosions that probably would only show in MRI. He thinks that for some people the inflammatory process causes a problem in the neuro pathways which in turn causes a kind of chronic pain disorder for some.

Not psychosomatic - he didn't mention Fibro - and also said this wasn't the same as neuropathy so it probably wouldn't show in nerve conduction studies. He mentioned Vasculitis which most people with connective tissue diseases will have to a greater or lesser extent. It was very interesting although he admits that he is usually not able to help or treat patients with this type of pain effectively as the neuro response has already been triggered/ set in motion during a phase of very active disease.

Originally Posted by en bloc (Post 1181969)

Was he trying to say that the minor erosions were damaging the ganglia? I thought we had discussed this before....ganglionopathy. This is quite difficult to detect and confirm as there is not many tools available to inspect the dorsal root ganglia. Johns Hopkins has a new MRI/MRN that has this capability, but I know of no one else that does...certainly not in the UK/Scotland.

This is, as he stated, hard to control pain. But I will say that there are pain mgmt options that work well with this type of nerve pain. The Fentanyl patch is one. It works great on nerve pain, yet not as great on bone pain (from RA).

So, are you going to get an MRI to confirm the erosions, so you can get on a new and better pain mgmt plan? Have you ever had an MRI (on brain, neck, spine) during your work up? If so, what did it show (any signs of erosions or even minor deterioration)? You are right...this type of neuropathy (ganglionopathy) does not show up on nerve conduction studies or EMG's. It sometimes doesn't even show in skin biopsies (except the condition of the fibers may be effected--but yours wasn't checked for this).

What's your plan now that you've talked to this professor?