Neuromuscular In memory of Rose Marie.

 
 
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Old 09-29-2010, 07:13 PM #4
dahlek dahlek is offline
Magnate
 
Join Date: Aug 2006
Location: metro DC suburbs
Posts: 2,576
15 yr Member
dahlek dahlek is offline
Magnate
 
Join Date: Aug 2006
Location: metro DC suburbs
Posts: 2,576
15 yr Member
Default 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!!!!!!!! 's!!!!!!!! - j
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