Paul Buehler
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June 19, 2021 at 3:20 pm
my doctor just changed my IVIG frequency because my WBC and platelet count kept going low afterward. My hematocrit also dropped but stayed just in the low normal range. He said it could be the IVIG was somehow suppressing my bone marrow or I was having some type of autoimmune reaction to the IVIG. Now that I’ve spread my treatments out my levels drop afterward but stay in the low normal range.
May 27, 2021 at 5:47 pmSo I don’t really follow individual experiences because we are all so different if 1000 people out of billions have a bad reaction to a vaccine it is a very uncommon side effect. That’s why I look for the cumulative experiences. I have CIDP, I got the Pfizer vaccine. No reaction to the first shot and one day of fatigue (worse than my usual) after the second. No problems after that one day.
April 30, 2021 at 7:25 pmThanks Sandra, I’m still up and down but usually low BP and low pulse. They put me on Wellbutrin as it helps some with energy and a side effect is high BP. Not working for me. Did your doctor prescribe anything for the low BP? Thanks!
April 30, 2021 at 7:24 pmThanks Sandra, I’m still up and down but usually low BP and low pulse. They put me on Wellbutrin as it helps some with energy and a side effect is high BP. Not working for me. Did your doctor prescribe anything for the low BP? Thanks!
February 24, 2021 at 7:30 pmJust to follow back up. I had the Pfizer vaccine earlier today. No reaction. Not even a sore arm. Looking forward to getting round 2.
February 21, 2021 at 1:35 pmThanks Jim!
February 20, 2021 at 7:47 pmHi. I have a scheduled appointment for the vaccine this Wednesday. I live in NY and am only eligible because I have CIDP… I think. The website and only info I can get is health related eligibility if one has a neurological disorder. Does anyone happen to know about NY eligibility?
February 16, 2021 at 8:53 amThank you Mike! After being sick without a diagnosis for 12 years the way I finally got to treatment was never settling for what a doctor said if I felt it wasn’t quite right and always pushing the envelope. I guess that won’t work anymore and I just need to be patient with healing. Again, thank you.
February 13, 2021 at 5:16 amHi, yes. I have had numbness and tingling around my eyes like a mask for years in addition to my feet, fingers and on and off inner thighs. The facial numbness sometimes is around my lips as well but predominantly around my eyes. It is a little better since 7 months of IVIG but still there and gets worse the more tired I am.
