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Old 03-22-2011, 03:47 PM
Edfe Edfe is offline
New Member
 
Join Date: Mar 2011
Location: Eastside of Seattle Area
Posts: 3
10 yr Member
Edfe Edfe is offline
New Member
 
Join Date: Mar 2011
Location: Eastside of Seattle Area
Posts: 3
10 yr Member
Default Multifocal Motor Neuropathy with CB

Jenny,

Before the IVIG I was unable to use my left hand and had lost much of the right hand. I had lost 60% of the muscle mass on the left arm and 40% on the right. My legs had started to have some problems as well. I run a huge computer lab, could no longer type and wondered how long I would be able to work.

I have now been on IVIG for at least the last (3) three years and have all of my muscle mass back, and hardly any control issues. Over the last year I have lost 76 lbs. with no change in diet or exercise.
Side Effects:
During the first 5 day phase I ended up with severe headaches and had to stop after day 3, I however have had few headaches since then. My biggest side effect is feeling rundown for a couple of days after the treatment.

Life has greatly improved for me.

Going from no or little use of my arms and hands to being able to do everything again is a reversal in my book. Why they don't consider that a reversal however is beyond me.

I still have a ways to go before I reach the max dosage you can have and expect based on my current progress to be ok for the next 10 years.

Not at all bad for someone who has had Multifocal motor neuropathy (MMN) with conduction block for 16 years. You can be glad it only took 9 months for you, it was over 10 years for me and I was told I had everything from Luke Garrett disease to MS. Or perhaps it was all in my mind. If you think that did not ruin my day….

There is hope and it really could be worst. I will add you to our prayers tonight.
Ed
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