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Old 02-17-2010, 07:38 PM
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cyclelops cyclelops is offline
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Join Date: May 2007
Posts: 2,049
15 yr Member
cyclelops cyclelops is offline
Magnate
cyclelops's Avatar
 
Join Date: May 2007
Posts: 2,049
15 yr Member
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I have small fiber neuropathy and an ANA of >1:1,280 with a speckled/nucleolar pattern and it has been this high for two years. My lab doesn't go past this dilution, so my titer could be far higher. I don't have the + specific antibodies that you have (at least not as of 6 months ago...will find out this spring what it looks like now).

Others on here may chime in with their knowledge. I am sure some one has some of the antibodies that you have.

A skin biopsy would confirm if you have small fiber neuropathy.

I had all over pain until I QUIT my narcotic meds....sounds odd, I know. I am still in pain in certain areas, and it hurts substantially but it is not all over. Interdose withdrawal causes some serious pain. Now I no longer have that. Although at times, pain in my right leg and in both hands is almost unbearable. I have migraine like head and neck pain, back pain, hip pain. SFN isn't just hand and foot pain, it can be a 'bone' like pain, deep and aching too. I am quite limited.

I have sensory and autonomic neuropathy. I am on IVIG. I had Lyme 16 years ago. I am currently diagnosed with primary Sjogren's, but the rheum feels that is not an accurate diagnosis yet....stuff is evolving, I guess. I won't get into all my issues.

Judging from your screen name, you are quite a bit younger. I am grammyof3.

My rheum said that neuro is very slow to respond to IVIG. IVIG is one of the better treatments out there, others have such substantial side effects.

I guess I would ask about a skin biopsy if you feel you need validation that this is or is not small fiber.
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