I'm on a trial of IVIg for a tentative MMN diagnosis. Lost functionality in left hand before treatment--no extension in thumb or index finger, plus my wrist is starting to feel funky. So far (after 3 monthly treatments) I only see a reduction in fasciculations and cramps, everywhere except my left arm & hand. Can it take a long time for improvement? Do these minor symptoms typically respond first?

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I'm curious about the same thing. My husband was diagnosed with MMN in February of 2010. He started receiving IVIG in May (after battling it out with the insurance company) and now, after 4 treatments, the weakness seems to be getting worse, although his cramps and twitching are WAY down all over his body. I'm hoping this is just the way the process works. Anyone have any firsthand knowledge of this?

I have been on ivig every other week since January 2010. I am noticing less cramping but the weakness seems to have started increasing. This is the first time I have read about it in posts and I thought..wow...is this happening to others or have I just missed it before now?...

Hello Christine,
I have been diagnosed with MMN Jan. 2010. The doctor also gave me IVIG and after the first dose, (of two.) I got AMS, (Aseptic Meningitis Syndrome.) 4 month later, the doctor suggested a different brand of IVIG, given over 5 days, 20% each day. After the 3rd dose, I got AMS again.
A different doctor, advised by my first neurologist, prescribed, Hizentra, given subcutaneously, at home.

I started, 7 days of 3 grams, (15ml) 2x a day, the first week, then 2x a day, twice a week. I did we'll on it, but after 8 month the doctor up't the Hizentra to twice a day, 3x a week. And since October of 2012, he up't the Hizentra to 4x a week, twice a day. I live in Michigan and go to U of M. The doctor now is advising for me to consider Rituxan. I also have a a elevated protein in my blood.

The Hematologist and the Neurologist think MMN and this elevated Protein may be related, not sure however. It seems the Hizentra works well, but need more as time goes on. It is also very expensive, my insurance and Medicare pays most of it. I am worried trying Rituxan since I could not tolerate IVIG. Would like to hear from you and others?
Maria

Hi there,

I am new to this group. I recently diagnosed with MMN months after seeing close to a dozen doctors in different disciplines. Now I just started the first treatment of IVIG with 2g/kg/month. Don't know the efficacy yet.

My question is about applying for LTD from my company. My job demands me to respond promptly with my fast key board typing. But, due to MMN I have lost use of my left hand fingers. which have a huge impact on my response time and operation accuracy. I am worried that I may lose my job because of that. The neurologist suggested that I apply for short term disability leave (STD). But, by doing some self education, I realized that, MMN is not a short term disease. What happens after the 3-6 months is over?

Anyone has experience in applying for, and getting, long term disability(LTD)? I guess what I would like to know is:

Does "drop fingers" qualify for LTD?
How to apply for LTD and what procedures do I need to go through?

Thank you in advance.

Donald

Hi Donald. I'm pretty much in the same boat as you. I'm a computer consultant, and used to be an awesome typist. Now I'm thankful that the latest Mac operating system has dictation built in.

I'm self-employed and am adapting to my limitations, such as not being able to do as many hardware jobs and repairs as I used to. All those teeny-weeny screws just don't cooperate when your hands shake! And, as you say, MMN looks to be a long-term thing. Only the very few lucky ones see much of a reversal.
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