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Old 11-13-2022, 03:00 PM #1
Emvale Emvale is offline
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Default Multifocal motor neuropathy

Hi there.
I'm new here.
I was diagnosed in 2015 with MMN
Originally misdiagnosed with something similar and told I had 5 years to live. Well anyway I told them they were wrong the next day, after praying to God for several hours through my tears during the night. Finally told I had MMN
I've been on ivig ever since.
I struggle mentally often with it, more so as the ivig begins to wear off. I stress about the future,. I was originally every 12wks, then 10, 9, and now 7wks, but even now I'm ready after 5, as I notice I'm needing to pull my *** up the stairs. I have also started to experience jelly legs now and then, and my ankles will just mis-step and my legs will just crumble beneath me, happened again today whilst out on a stroll. I'd literally just said to my daughter, hey my legs feel all jelly, then 2 minutes later my kept ankle just went, and down I did go!
This has knocked my confidence and added to my stress, especially as I've only just had my ivig on Monday and Tuesday.
Anyone else have similar experiences?
Thanks 👍
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Old 11-14-2022, 11:12 AM #2
glenntaj glenntaj is online now
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glenntaj glenntaj is online now
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Default Welcome to Neurotalk.

And, while I don't personally have MMN (my neuropathy is idiopathic but likely autoimmune as well) I highly recommend becoming familiar with the GBS/CIDP Foundation, which also covers conditions such as MMN:

Home - GBS/CIDP Foundation International
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Old 11-14-2022, 11:24 AM #3
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Welcome, Emvale!

I have MS and can't answer your specific question but
it sounds as if you've been unnecessarily scared by one of those doctors with a "crystal ball." Doctors shouldn't make predictions about how long someone will live, IMO.They really can't know.

I found this about MMN (last updated in July 2022):

Multifocal Motor Neuropathy - StatPearls - NCBI Bookshelf

Here at Neurotalk you will find discussions of MMN in the Peripheral Neuropathy, Neuromuscular, and Autoimmune Diseases sections. You might find it useful to enter "multifocal motor neuropathy" in the search window if you haven't already done that.
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MS diagnosed 1980. Type 2 diabetes, osteoarthritis.
Avonex 2002-2005. Copaxone 6/4/07-5/15/10. Currently: Glatopa (generic Copaxone), 40mg 3 times/week, since 12/16/20
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Old 11-14-2022, 12:07 PM #4
Kitt Kitt is offline
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Welcome Emvale.
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