MMN, exercise, ivig
 

I have MMN which has given me weakness in my hands, left leg and both feet. I tire easily and it can take a number of days to recover if I do too much. I am wondering if anyone out there has an exercise routine of some sort that works for them. Multifocal Motor Neuropathy is rare enough that most drs, physical therapists, (and everyone else) haven't heard of it or know much about it!! Just hoping that I can get some input : ) I do have IVIG treatments every other week which seem to help the cramping...not sure about the weakness. I would truly appreciate any input...even just connecting with others.

Response variations to IVIg?
 

I can't help with the exercise question, but I would like to know how quickly you saw improvement with the IVIG. I've been getting it for about 5 months now, and it immediately helped with fasciculations and cramping everywhere except my left arm and hand (where I've lost extension in 3 fingers, one of them since the IVIG started.) My doc, who has not had an MMN patient before, seems puzzled by the inconclusiveness of my response. I feel that it IS helping, but I'd really like to find out if other people have had an effect on these lesser symptoms first, and then had improvement in the more severely affected limb/s after several months.

I have been on ivig every other week since Jan 2010. I have had quite a few other ivig schedules when they have started with the "every day for a week, then 2 days a week, then 1 a week for "x" amount of weeks. I saw improvement many times. The current regimine seemed to work in the beginning but I am now noticing increased weakness. The cramping seems to have improved. I am going to make up a list of questions for my neurologist. I see him in January 2011 but have a need to let him know about the changes before I can see him.

I don't have MMN, but I do have CIDP? So...
 

Gotta ask you, are you on neurontin/lyrica or other neuro-pain modulators? Or other stuffs? Lots of these-IF you web up their 'full prescribing information' you can scroll down and find out reported side effects in clinical trials and from afterwards.
Mrs D turned me on to the fact that many of these meds are calcium depleters...along with magnesium and Vite D...which ='s aches and cramps in the muscles...ergo? Look up under the 'supplements' forum? all about these supplements! They make a world of difference! They don't work rite away? It takes about 3-5 weeks before you can really appreciate things. But they DO WORK!
Do you know IF your dosage and brand are right for you? Check out this web site: http://www.igliving.com/ It's a free web site for IG users? Call or e-mail Chris and wait a few days...she will get back to you...BUT you will have to have your last test results handy, the brand you are infused with, and the doseage...I do know that she's been responsive to me, and many others that I've referred to her... If you sign up for the 'webzene'? It's free, and you don't waste paper on the magazine itself.. And, you don't get junk mail [WHEW!].
I've been on IVIG since early '04. I've now a port installed into me? [kind of like a plug into?] to get the stuff I need. The port was after several years of poking small veins that 'did not want to get poked?' -Last year... as I said, plug in? Get juice for a couple of days, then plug out...
Feel free to PM me for all my 'exercise resources' - the thing for you is to go slowly, consistently and steadily, definitely with a 'home program'... the type of program you can/could continue on at home after therapy ends...something you MUST ask the doc ordering therapy for!
Ask me and I'll try to help? But I'm no therapist? Just been thru a lot of them! Good and bad.
Keep faith that you are on the right track - in that when you are infused? You feel better, albeit for a short time. Keep a diary about that 'better' or less 'good' as days go by.. It's useful for docs to pinpoint how much and when to 'juice' you. Hugs and good things!!!!!!!! :hug::hug:'s!!!!!!!! - j