Quote:
Originally Posted by en bloc
Since you mentioned "intense dryness of the sinuses", I'm curious if you have dry eyes or mouth? Sjogren's is an autoimmune disease that is not only common to include neuropathy, but 40% of patients have negative blood work. Have they run SSA & SSB for Sjogren's? If you have dry eyes or mouth, I would request they run these labs. If they are negative, then you might request a lip biopsy.
Also, did they diagnose neuropathy just from temperature & tuning fork? Did they do a skin biopsy for small fiber neuropathy? If not, it might be worth asking for.
BTW, iron deficiency anemia is also common with autoimmune disease. There are options to increase ferritin if supplements are not working. One is Ferrlecit (iron) by IV...if your doctor thinks it's bad enough. Do you know your ferritin level?
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Thank you for your thoughts. I don't have dryness anywhere other than my nose. Occasionally my eyes too, but I just attribute that to wearing contact lenses - I've had that for years. I was tested for the Sjogren's antibodies and was negative (twice) though many of symptoms fit and I know it's possible to be seronegative.
Yes, he did diagnose neuropathy just from the temperature and tuning fork. I will ask the new neurologist if he thinks a biopsy would be advisable.
My ferritin is always about 20. I think I've seen it in the 18-22 range whenever it's been tested. The neurologist said it's not horribly low, but low enough to cause some symptoms and it would be a good idea to try to increase it. He said he likes to see a minimum of 45 and would rather it be over 65.