For almost 2 years now my husband (32 yrs) has been suffering from bilateral trigeminal neuropathy (pain, paresthesia, left corneal reflex problems etc.), which started with burning red eyes and paresthesia on the root of the nose. He's responded to Tegretol for stabbing pain, Lioresal for cramping pain. He's left with burning pain, which feels "mechanical in nature". Recently a prognostic block for the second branch on the left has appeared to be rather succesful, also agianst the burning. So far all tests have been negative for auto-immune problems, but the neurolgist has thought of connective tissue problems, but hasn't been able to prove it. My husband seems to go thru a cycle of slight swelling and pinkish/red discoloration around the nose and upper lip (a "snout", not really a malar rash), and an increase in pain, which after a day or two brings several small lesions in his mouth. This increases with activity and seems to calm down when he takes complete rest. The lesions then too clear up after about a week or two...
Does any of this ring a bell? It would be nice if we could figure out what the cause is of all of this and maybe start treating the problem instead of just the symptoms... (Although he does have a great anesthesiologist helping him.)
BTW CT and regular MRI did not show any lesions or tumors. Last friday an MRI with contrast was made. All tests negative a year ago, except Varicella and CMV (not active, I think). CPK slightly elevated 228.
The first thought that comes to mind is if these lesions represent a hepres virus infection. The herpes virus, once contracted, resides within our bodies within the nerves. Then periodically it re-activates and causes symtpoms. When these lesions are present, if possible, a scraping of the base could be sent for herpes examination. Other thoughts would include connective tissue diseases or vasculitis (inflammation of blood vessels) however given the stereotyped location and lack of more systemic activity these are less likely. Other disorders such as isolated central nervous system inflammation should not cause the lesions. Blood tests which may be helpful include a sedimentation rate, C-reactive protein, anti-nuclear antibody, and rheumatoid factor. This would provide an initial screen for inflammation or connective tissue disease. Good luck
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