IVIG treatments
 

I have been diagnosed with CIDP maybe MULTIFOCAL MOTOR NEUROPATHY. Have had no significant pain but significant weakness in first left foot and leg the right foot and leg. Now moving into core. Can hardly walk. Prescribed IVIG treatments which Insurance is balking at. Very expensive. Am now on Prednisone starting at 60 mg a day for two weeks tapering down to 50 mg for two weeks then 40 mg etc. Anyone have any personal experience with this to impart. Perhaps other approaches.
Thanks

I was in Chemo one day and the guy in the chair next to me was getting IVIg for CIDP (going on six years so far). His symptoms sounded a lot like yours, though more symmetrical, and it might have been numbness rather than weakness. The IVIg has an immediate positive effect for him; he says he maintains at about 80% of normality.

I've been diagnosed with MMN by the Mayo. I do not know if the IVIg is helping me--the only way to tell would be to stop and see if symptoms worsen more rapidly. Luckily my insurance, Blue Cross, has not balked. Yet.

I started with weakness, tremors, and fasciculations in my left hand five years ago. Last year I started losing extensibility in the fingers, one at a time. I can now only extend the middle finger, which is useful in road rage situations. I now have fairly constant fasciculations all over, muscles cramp easily, and my right hand is getting weak.

MMN is so rare that it's hard to find similarly-afflicted people to share experiences with. This forum is the best I've found so far, but activity is sparse. I'm planning to start an MMN blog ** soon to make that easier.

Ivig
 

I have had multiple sclerosis for over 30 years now. About a year ago my neuro wanted me to have IVIG but the insurance would not pay for it since it is not an approved treatment for MS.

In April, I was in the hospital for what I thought was an exacerbation of MS but my new neuro ordered some tests which showed I now have myasthenia gravis and IVIG is approved for it.

I had a 5 day course of IVIG in June, a 3 day course in July, and will have another 3 day course in August. I got the first statement for the 5 day course and it was $65,000. I hope and pray my insurances will cover the cost. I don't know if it is working or not as I also take Mestinon every day for the MG.

It has been so hot this summer I can't get out and have been only out for dinner. I have read it sometimes takes up to 12 weeks to know if it is working or not.

Gabriella

A forum just for those with MMN: http://www.mmnforum.com/forum

Steroids like prednisone are supposed to be avoided as they can make MMN worse, though they *are* considered a treatment for CIDP. At least, according to some of the sources I've read. You see quite a bit of conflicting information.