Old 02-09-2018, 03:43 PM #1 (permalink)
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Default Trial of IVIG

My mom is 71. She has had one emg that said cipd but no other results showing inflammation. Two more emgs suggesting als. We finally met with a dr that felt ivig is worth a shot since some of her symptoms are atypical for als (burning and tingling in her legs past three years, hand symptoms started 21 months ago which seems like a slow progression bc she is still using them). My question is - how hopeful can we be that ivig will disprove an als diagnosis? Did many of you have this scenario (diagnosed als and then disproved it with trial of ivig)? Thanks for any advice. We are nervous and devastated.
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Old 02-09-2018, 06:56 PM #2 (permalink)
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Default Re: Trial of IVIG

It is sort of the last thing to cross off before all there is ALS. Multifocal motor neuropathy is a condition that can mimic ALS, but responds to IVIG with symptom improvement. One thing to be careful of is blood clots, a very rare side effect that happened to me after beginning treatment. As I said very rare but so is ALS. Good luck with the trial. Any sudden intense pain even weeks after get to emergency asap.
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Old 02-12-2018, 02:12 PM #3 (permalink)
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Default Re: Trial of IVIG

Hi, I am brand new- first day on site. I read a tread from caregiver V. She was reporting that her husband has been given the generic form of Mestinon, a drug for MG. It has slowed down the progression of his ALS.
I have been on IVIG and Mestinon since 2013 when I was diagnosed with MG. But my Dr. finally diagnosed me with ALS because everything has been eliminated, and my MG is too mild to account for my symptom. His only confusion was why my MG meds helped. So I quit my MG meds and after 2 days could barely move. Two days back on meds, and back to my new ďnormalĒ.
Thatís when I found Vís comment. There is no confirmation from a dr, but itís worth a try. The MG generic is pyridostigme. It does not build up in your system, so itís pretty safe and cheap.
I sure hope IVIG helps! Good luck.
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