Originally Posted by Marie33

I have been reading posts regarding SFN, Sjogren's, autoimmune deficiencies and IVIG . I was first dx by punch skin biopsy in 2011 with Idiopathic SFN 5 years ago. It started with pins and needles in my calves and burning under my feet. I live in Long Island , NY. My Neuro-muscular Neurologist from Stony Brook Neurology did not think I was not a "candidate" for IVIG at that time 2012. She said it was an aggressive treatment and my SFN was "too mild", and that the risks outweighed the benefits. Fast forward 5 years later. My SFN (Small Fiber Neuropathy) has progressed to my arms, hands, torso, face and mouth. My symptoms are bad pins and needles, horrible buzzing, tingling, stabbing, painful itching, tightening pains in my thighs and calves, bad burning all over, etc. I developed a bad tinnitus that coincides with the buzzing and burning. I have all the listed sfn symptoms and some..However my 3rd skin biopsy done at Mt Sinai Hopsital, NY I had this past March 2015, showed "Normal..Not consistent with SFN. I was hopeful I was healing. Even Dr. Lan Zhou (You can look her up on the Internet, she is a "skin biopsy specialists") said it looked like my nerves were "healing" and that I should start to feel better. That never happen

I had many blood-tests, MRI'S Brain & Spine over the past 5 years and everything always came back with in normal range. Just recently one of my IGg (Subclass 3) was slightly low. Mine was 20, The lab range was 22+.. My Neurologist said it meant I had a "non-specific autoimmune deficiency". So He had me do a special blood test for Sjogren's. It was sent to Immco Diagnostics, (I was told they are the only Lab in the US that does this Blood testing).

Today the Doctor's office called me to tell me my test report came back , (I asked for a copy) it showed only 1 marker was elevated out of 15 Antibodies. It shows 25.9 and the Lab range is > (below) 20. The Carbonic Anhydrase VI (CA VI) IgM is elevated. I asked the coordinator what this meant, said she did not know and that I had to wait for the Doctor to explain to me what the results meant. The Neurologist ( of whom I don't like, his bed side manner is horrible) is on vacation until next week. I probably will not get an appt with this Neurologist for awhile. Should I go see my Rheumatologist instead?

I have no idea what is going on with me. All's I know is I have some kind of autoimmune disorder or disease or even Sjogren's that is either first or secondary to moy painful SFN. I have read on the internet alot of bad things, how Sjogrens can attack body organs.

Can anyone help me with this until I see the Doctor? Does anyone know what this test result may mean based on what I wrote here? I'm depressed and and have some anxiety over this, If it is Sjogren's , then I will have a lifetime of a "progressive disease" with no treatment. (I'm afraid to have the IVIG Therapy). I do not have dry eyes or dry mouth. Just this painful nerve disorder. Sorry for the long post. Thank you in advance.