Reply To: MMN anyone update on here with it?

May 28, 2020 at 2:17 pm

I first noticed weakness in right index finger in 1990 & thought it might just be related to aging. (I was 54.) Gradually more weakness in right hand & noticed hollow between thumb & index finger in 2009, so saw hand specialist, who referred me to neurologist. After EMG he suspected MMN & tried loading dose of IVIG. When I didn’t respond immediately, he concluded that I must have an even stranger disease (monomelic amyotrophy), which generally only affects young Asian men, of which I am none. For the next 8 years, my right hand, arm, & shoulder atrophied & grew weaker & I started noticing leg weakness, as I read the same few paragraphs online over & over again about young Asian men. I finally sought a second opinion, & my new neurologist told me that it may take several months of IVIG to begin to see results. Over 6 months of treatment, I started to see improvement. Over the next 6 months of treatment (1mg/kg every 4 weeks) I seemed to stay the same. Over the last year I have varied between staying the same & getting weaker. I asked my doctor about experimenting with increased dosages or shorter times between treatments, but he was unwilling, saying he was following gbs/cidp guidelines. Recently I participated in the online MMN forum & asked a question about my issue. I was encouraged to have my doctor connect with the foundation for a doctor to doctor consult. So far I have called my doctor’s nurse & emailed my doctor & am waiting to hear back.