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  • IVIg infusions for SFN

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    Old 10-30-2010, 10:42 PM   #1
    Ruby8
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    IVIg infusions for SFN

    I have just started IVIg infusions for my small fiber neuropathy. This is because I have a low Immunoglobulin G (IgG) count. While I know IVIg is more commonly used for CIDP, a demyelinating type of neuropathy, evidentally there have been cases where SFN has responded to IVIg infusions. Have any other SFN sufferers out there ever been treated with IVIg or ever had there IgG counted tested? - Ruby

     
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    Old 10-31-2010, 01:10 AM   #2
    daisymaegrl
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    Re: IVIg infusions for SFN

    Hi Ruby
    This treatment was suggested to me a while back but was never pursued by the doctors I saw. They mentioned it and then it was dropped. Wouldn't it be wonderful if it helped you??
    I have not had the IgG test and I am bummed because they have basically given up on me. The last neurologist who said she was a specialist in SFN said all she could suggest for me was nortriptyline. I was shocked that she offered me nothing more than that.
    She did say that she would recommend that I go off on disability as I would eventually be unable to walk, but to keep in touch in case any new developments came down the pipe. Pretty nice eh?? I just left her office in shock that she would just say that to me so bluntly.
    Please post and let me know how your treatment is going. I am so, so interested as I am getting so much worse. If it helps you then I have hope for myself!!
    My very best wishes to you!!!!
    Daisy

     
    Old 11-04-2010, 11:10 PM   #3
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    Re: IVIg infusions for SFN

    Hi Daisy,

    I get so darned mad when I hear how the doctors have treated you. Wish you lived where I do as I have been lucky to have gotten very good medical care. I believe I read that you were off acupuncture for awhile because of a move. Hope you have been able to start that again as you felt it helped you. I'll certainly post how the IVIg works for me. Even if it doesn't work for me, that doesn't exclude it working for you or others. I don't know how they test for CIDP, but you may want to ask your doctor, seeing as your doctors had brought up IVIg before. I've heard IVIg infusions can work wonders for those who have the CIDP type of neuropathy. Hugs to you, Ruby

    Last edited by Ruby8; 11-07-2010 at 11:51 AM.

     
    Old 11-07-2010, 11:36 AM   #4
    daisymaegrl
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    Re: IVIg infusions for SFN

    Hi Ruby,
    Thanks so much for posting to me! I sure hope you are finding some relief.

    I have started back to acupuncture and they feel that the burning tingling awful pain in my feet is originating in my back. Once, long ago I had a CT scan of my upper back and neck that didn't show anything out of the ordinary. But the acupuncturist feels that this is stemming from a disc problem in my lumbar area, something no one has even mentioned before. So that is how they are treating me. I have had 3 treatments so far this session, and the difference in my pain level is amazing. I also get a very painful massage of my feet as well,
    but it seems to make a lot of difference in the numbness in both of my feet. The acupuncturist said that they have seen people such as me who had no symptoms other than the terrible burning, tingling, numbness and pain in their feet and they turn out to have very bad back problems and sciatica.

    My feeling is that I have a combination of problems going on. The doctors I have seen have been trying to pinpoint one culprit but I feel there are several to blame. I do have RA, fibromyalgia and now the diagnosis of SFN, but I also feel that they have missed the back component.

    I am so thankful I decided to try acupuncture. It takes about 3-4 treatments to see results. I am scheduled to see the pain doctor coming up this month. He doesn't do anything but go over my prescriptions and make recommendations to my gp. It is a much different system here in Canada, but I am going to tell him about the acupuncture .And I want to ask him about the CIDP testing and the IVIg.

    I feel so much better today after my last treatment but I am scared it won't last.

    I wonder how we will feel now with the colder weather coming. My body hates the heat,
    and it never gets really cold here. But because I live on the coast it is very damp.

    Please keep me posted on your experiences,I do wish you the very best!!!
    Take care,
    Daisy

     
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