Can you please get me your external email and I will introduce the two of you.
Have a great weekend!
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Will send her an email and I may see her on Thursday. As far as I know she needs to have monthly infusions forever as that is how IVIG works, but I know she had substantial relief in the first two days of her first infusion. It is idiopathic SFN and I think that the abnormalities were in the EMG and skin biopsy. There is a trial which I think is still recruiting right now at Brigham and Women's in Boston. You can contact Dr. Oaklander at MGH for information, not sure when they will be done recruiting.https://www.google.com/search?q=doctor+oaklander+MGH&oq=doctor+oaklander+MGH&aqs=chrome..69i57j0.12978j0j4&sourceid=chrome&ie=UTF-8
Ask your doctor about IVIG. There is a double blind study which I think is still recruiting which is set to prove whether IVIG can reduce/eliminate symptoms in people with SFN. It is expensive and hard to get coverage under most insurances. I have idiopathic short, long, motor and autonomic nerve neuropathy and IVIG has helped to eliminate some symptoms, slow progress on others. Worth a look as it is the best drug out there that reduces/eliminates symptoms rather than masking them.
I have had IVIG since consistently since August and it has reduced my symptoms by 40 to 60 percent depending on the time and dosage. The liver is constantly removing antibodies and IVIG antibodies are 50% removed within 21 days and as a result many of my symptoms would return in week four. I finally convinced my doctor to go to every three weeks to see if I had more of an effect if my symptoms didn't keep yo-yoing. It turns out it is standard practice after 3-6 months to try a reduced maintenance dose so when my doctor increased the frequency of infusions he reduced the dose by almost 60%. Unfortunately this allowed my neuropathy to advance and I had no positive response to the lower dose. I have convinced my doctor to do a trial at my original dose but on an every three week schedule. Unfortunately my PN has advanced so I walk with my legs frozen straight and after 2 doses three weeks apart the IVIG is no longer loosening up my legs. I have 2 more infusions and if I don't get better I will switch to a chemotherapy to suppress my immune system called Rituximab since my PN is autoimmune mediated. If you have a chance try IVIG. From my research IVIG has the greatest chance of reversing symptoms if it works for you and your kind of PN.
My understanding is that the two people had mostly pain and symptoms in their hands, feet and legs. One definitely was diagnosed with SFN with no other markers of an autoimmune disease. I have pains elsewhere for example in my back which IVIG has helped. My teeth on my lower right jaw are going numb (like novocaine) and it doesn't help that, so not a cure all but worth a shot if you have progressive PN.
IVIG takes the antibodies from numerous (I've been told 1000) od transfusions and you have monthly infusions. If your PN is autoimmune mediated, the infusion will knock out the antibodies your body is making. IVIG is one of the few treatments that will actually reverse symptoms. When I first started taking it my legs were cramping so badly I walked like a zombie and thought I was quickly heading for a wheelchair. IVIG did an amazing job my first few infusions relaxing these cramps. It also eliminated several neuropathic muscle pains I had. Google it and see what you think. There are studies going on using IVIG for SFN and the initial results are promising.