Quote:
Originally Posted by Summerfun
But leaning toward post infectious or GBS. I don't think they know enough about this disease yet to pinpoint a cause but it helps to know they are working on it. At least that's my sense. I do not see Dr. Oaklander but a doctor on her staff. He does not think I need/am ready for IVIG. I see him on Monday so I will update you if I learn anything new.
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Hi...I saw my neurologist and he will set up time for me to have a discussion with Dr Oaklander. He still does not think IVIG is right for me. He seems to have concerns about side effects. It has risks and does not always work so it is important to make sure it is appropriate for each person. Based on my "patchy distribution" of pain from face to toes he believes mine is a ganglionopathy and I will have pain every day for the rest of life. Not easy to take. He is testing (again) my ANA and also looking into hereditary causes, sodium channels. Two of his patients have hereditary causes and were put on sodium channel blockers reducing their pain from 8 to 2 on a scale of 1-10. On another post I mentioned my elevated B6 from a vitamin B Complex. He was not overly concerned about the level. Said I "dodged a bullet" by stopping it when I did but he is retesting the B6 level as well. That's it for now. Rainy and raw here in NH....not my kind of weather!