Quote:
Originally Posted by jake100
Hi, Good luck with Your IVIG. I am almost in the same situation and got my first IVIG last week. History: My problem started seven years ago with pain in foot and then calves upon any movement, exertion (standing, walking, Exercise intolerance basically) gotten worse over years and affected back and hand muscle as well and become fatigue because of pain. Two years ago in columbia they did skin biopsy and they said I have SFN. Even though mine is basically caused by exercise which I could not see in SFN documentation a case like this.
IT is idiopathic. I saw an immunologiest that I can try IVIG based on somehow low igg count and see if it helps. My dosage was only 40 gram. I had a bad side effect and I did not notice any improvement yet but maybe still so early. She said I may need to repeat ivig to see if it helps at all.
How long before IVIG helped any one?
Does anyone had similar to my symptoms ? is it SFN?
Anyone can recommend any doctor which is both Neurologist and Immunologist? I live in NY
I tried reaching out to DR Oacklander but was told she is not accepting new patients
Thanks all
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Jake,
I don't have experience with your symptoms, but can tell you that your IVIG dose is NOT consistent with that for neuropathy...so you may not notice any improvement. You said you are getting it for low IgG count, which is immune deficiency. The dose for that is 400-600 mg/KG whereas the dose for neuropathy is 2GRAMS/KG...3 times as much. If you are an average size male and weighed 180 pounds (81 KG), then you would be receiving 162 grams of IVIG...you are only receiving a quarter of that.
That being said, it does take time (months) for IVIG to work...it basically has to modulate the immune system.
You need to have your immune deficiency looked into, as 25 of people with immune def. also have autoimmune process. If your neuropathy is autoimmune based, then you really need a full dose for it to be helpful.