I've also reposted what I posted in the other thread yesterday:
Hi Marie,
I don't know about that test, but En Bloc clearly does. From the little of Know the most accurate test is the lip biopsy, which I'll push for in my own case. My ANA came back negative and I didn't know any other Sjogren's/autoimmune related testing. I had dry mouth but that's entirely gone at this point. I have issues with my eyes now and then, but it's not really dryness, or perhaps not typical.
On IVIG and treatment, En Bloc is the best to ask, since I am knew to this and so far I've received no treatment. But from what I've read, aggressive treatment may just be the best course for progressing SFN. Mine spread all over within a few months, and was pretty much all over already when it started, and has since remained stable and perhaps even improved in some respect. For that reason I haven't pursued medical treatment but continued my own natural course of treatment. That's for now at any rate. En Bloc has had to deal with the medical establishment and medical treatment, so she is the best to ask about this stuff.
I am so sorry your SFN is progressing and causing you such problems. I do hope you get good care for it. Have you tried diet and natural supplementation? I recall you may have, but can't be sure. They have helped me immensely.
Quote:
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 Hospital, NY I had this past March 2015, showed "Normal..Non 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 29.5 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 my painful SFN. I have read on the internet alot of bad things, how Sjogrens can attack body organs.
Can anyone help me interpret 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. |