ila.falvey@gmail.com
Your Replies
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December 19, 2017 at 5:50 pm
This is what I think I know. IVIG dilutes the concentration of the anti-Mag antibody but for some reason it is not effective for treating MAG. I have been to a total of 4 neurologists and I currently think I have one of the best. I was initially told by a doctor at Wash U Neuromuscular center to try Rituxan sooner than later if IVIG doesn’t work. He said that I would know whether it was working because my symptoms would decrease. My second Austin doctor kept telling me that IVIG was working and I knew it wasn’t but he did not listen to me. My first Austin doctor did not want to deal with a MAG patient.
The longer a MAG patient waits, the more of the myelin shealth is destroyed. The anti mag antibody creates “moth holes” in the myelin shealth. If there is axonal damage, it is very difficult to reverse. Theoretically, myelin shealth damage can be reversed if antibody production can be controlled.
HAS ANYONE TRIED A VIBRATION PLATE TO IMPROVE FUNCTION??December 16, 2017 at 10:55 pmHeidi and Jim
Thanks for answering my questions. I was told that medicare refused to provide a “PA” because MAG did not qualify for Rituxan treatment and there is no appeal process for medicare. I think they are pursuing the Part D prescription drugs. I have a Blue Cross Blue Shield Supplement (F).December 15, 2017 at 5:42 pmHas anyone had Rituxan -Rituximab treatment for MAG covered by Medicare?
Thanks,
IlaDecember 14, 2017 at 2:05 pmThanks Cat for the info.
December 13, 2017 at 10:07 pmInformation about MAG states that it is “slowly progressing”. What is your experience?
December 13, 2017 at 3:01 pmAfter 1 year of mostly unsuccessful IVIG treatments, I am biting the bullet and am going to try rituximab.
