Hi there,

I feel a little embarrassed logging in to this group as I don't yet have a definite diagnosis. All I have is a neuro - inflammatory condition and/or an autoimmune condition, possibly MS with MD, lupus and/or celiacs disease ........ . This is as far as I have got after 2 years of seeing neurologists and an endocrinologist for some two years. This lack of a diagnosis leaves me feeling desperate as I don't know how to proceed for the best or justify my condition to those around me. At the beginning of this year I had to give up my career and I now exist in a limbo which at the age of only 53 is very dispiriting.

Currently, I have multiple white matter brain lesions, muscle wasting and weakness in my left leg, sensory abnormalities (burning, pins and needles, numbness) and periods of stabbing pains above my left ear. I also have occasional purpura on the top of my feet (lasting 3 days), hives from my shoulders to hands (lasting 45 minutes) and a swollen tongue and throat, leading to a husky voice. I wake each morning with really stiff muscles and find it difficult to not to sleep all morning. But worse of all, I have lost sexual desire and the ability to orgasm, despite having recently regained some feeling in that area. This has lead me to feign sexual pleasure to keep my husband happy and maintain my marriage. After two years, this pretense is proving to be a strain and my the sense of loss is enormous!

Any advise/information would be appreciated.