[Kobyshelby]

Hi everyone , Just wanted to say hi. I suffer from multifocal motor neuropathy in arms and legs . Use a walker in the house , wheelchair outside. Been on IVIG since Jan 2015. Very frustrating disease . Can any members give me an idea of what to expect in the coming months. IVIG is slowly increasing my strength. Have infusions every 4 weeks. Week before my infusions I feel drained. Any info on this disease ? Thank you and look forward to the future on this site.

[Kitt]

Welcome Kolbyshelby.

[hydropillow]

Hi Kobyshelby,

I'm new here too and still being investigated by doctors. They suspect that I have polyneuropathy. I'm not really literate on the subject yet.

Good to read that your are responding to IVIG.
Did the doctors find any cause for your MMN to occur?
When did the symptoms start appearing?

Cheers,
Hugo

[zkrp01]

Originally Posted by Kobyshelby

Hi everyone , Just wanted to say hi. I suffer from multifocal motor neuropathy in arms and legs . Use a walker in the house , wheelchair outside. Been on IVIG since Jan 2015. Very frustrating disease . Can any members give me an idea of what to expect in the coming months. IVIG is slowly increasing my strength. Have infusions every 4 weeks. Week before my infusions I feel drained. Any info on this disease ? Thank you and look forward to the future on this site.

I have retired my walker to the closet but it took about a year after I hit"bottom". I have trauma Induced PN(car wreck) with a side of Diabetes and Amyotrophy. I have tried to fast track my recovery by the usual processes such as physical therapy, water therapy, etc. What you may have to expect in the coming months is more coming months. I do not intend to sound flippant but if your healing is dependent on nerve fiber regrowth or repair, it is slow,slow,slow. If you lurk and read, most here try to get the best nutrition, adequate exercise(to tolerance) and sleep. Reams of info on pain management also. Do you know what, if anything, caused your Neurapathy? Good Luck, Ken in Texas.

[Kobyshelby]

my neurologist basically said that my immune system mistakes my motor nerves for a virus . Symptons started almost 2 years ago. MMN mimics
ALS. That's what I was diagnosed with by my first neurologist (thank god he was wrong). After a series of additional tests my new Dr. Came to the conclusion or MMN. Thank all of you Jim

[Ragtop262]

Welcome Kobyshelby,

I've been reading and posting on this site for a few months now, and it continues to be quite amazing how many different types, causes, symptom profiles, etc. there are among the people with PN. It's good to see that you are getting the IVIG treatments - that seems to be one of the more promising treatments for those with autoimmune related PN. Unfortunately, its very expensive and sometimes difficult to get the doctors and/or insurance to approve it.

As Ken stated previous, the one common thing that we pretty much all try to do is give the nerve cells the best chance to survive and hopefully re-grow is proper nutrition (including supplements), exercise, and stress reduction.

Good luck with your treatments - keep us posted on how you are progressing