Living well for 21 years with Multifocal Motor Neuropathy (MMN)

Posted by riverrode @riverrode, 1 day ago

I was diagnosed with MMN in 2005 and have been treated with Cyclophosphomide, Intragram, Octagam, Flemogamma, and now I am receiving Privigen 10% 65gm 3 weekly. You will notice this is 25 years and the dosage of IVIG began at 33gms. I have had many reactions to the different variants and the ones with additives were the worst. I have muscle loss in my left hand at my thumb and finger. Therefore I have no fine motor function of my left hand. This was from the first instance and I have little to know progression since receiving IVIG.

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John, Volunteer Mentor | @johnbishop | 1 day ago

Welcome @riverrode, You will notice that we added a little to your discussion title to let those not familiar with MMN know what it is. I'm tagging @artemis1886, @evigg208, and @franksgirl210 who have mentioned having Multifocal Motor Neuropathy and may have some thoughts or suggestions to share with you.

For what it's worth, I did share this back in 2023 when I received an email newsletter from the Foundation for Peripheral Neuropathy that had this survey opportunity for those with CIDP or Multifocal Motor Neuropathy. It looks like it's still active so might be worth seeing if they have follow up information.
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You can help researchers better understand Multifocal Motor Neuropathy (MMN): Survey Opportunity
FPN is excited to announce that our partners at Inspire are conducting a study to help researchers better understand the experiences of people living with MMN.
Learn more... https://www.inspire.com/health/cidp-mmn-tkquant/
**NOTE: Survey is no longer available but the results have been shared here - https://inspireresearch.com/news/inspire-takeda-study-rare-neuromuscular-diseases/.

It's great to hear that you have seen little to no progression since receiving the IVIG. What has been your most difficult symptoms to manage?

megidigo | @megidigo | 1 day ago

In reply to @johnbishop "Welcome @riverrode, You will notice that we added a little to your discussion title to let..." + (show)

@johnbishop

Just a heads up the link in your post takes you to a Help Improve Care for Crohn’s and Ulcerative Colitis survey.

I used to have to notice and point out errors like that in my job so I guess old habits as they say. Makes me miss work lol but since I am having a follow up for gastro issues maybe I will be filling out the survey in the future. Who am I kidding I know it autonomic neuropathy…..