AGAIN, I URGE EVERYONE TO CHECK OUT THE STATS ON "IVIG"! PLEASE LOOK IT UP AND ASK YOUR DOC. IT IS COVERED BY MOST INSURANCE COMPANIES.
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UNFORTUNATELY, THE COST OF Rx AND THE CANNABIS IS TOO STEEP FOR ANYONE ON MADICADE / MADICARE (INTENTIONALLY SPELLED WITH AN "A") UNLESS YOU HAVE OUTSIDE FUNDS OVER AND ABOVE THE $40 THE GOVERNMENT LETS YOU KEEP TO LIVE ON. WHAT A CROCK.
Hi, all! My best friend has SPS and fell about 180 times during the 1st year. Head doc gave her baclofen and depacote and greatly reduced falls by 95%. BUT we found out that baclofen is highly toxic and was the reason for her experiencing terrible signs of dementia! It just toasted her brain. They cut the dose in half and now, 6 months later, she has her brain back!
What she should have received in the first place was a IVIG treatment (kind of washes the blood) and has now stopped having the spasms that made her fall. She is in a nursing home unable to walk (because she hasn't used her legs for over a year now) but will be starting physical therapy soon (as soon as stupid medicade kicks in).
STAY away from BACKOFEN!
Significant other here; just found this blog and would like to talk, but time prevents me. Just wanted to get this website out to anyone in need; will be back here as soon as I can. (just found out this board won't let me give out links) Google " NORD " (National Organization for Rare Disorders) and "Stiff Person Syndrome" Hope this is helpful.