Debbie
I don't feel comfortable posting that information publicly but I will certainly let you know privately if you wish. I will try and figure out the pm system on here but if you are already familiar with how to do it, pm me and I will simply reply to you with the information.

first of all i am new to this site. let me tell you a little bit about my story. in 2004 i started having twitching in my leg muscles, then it got worse and worse. i ended up in a wheel chair, untill i was diagnosed in 2006 with sps. a baclofen pump was in stalled in front side of my stomach with a cather around my side that hooked up to my spine. my daily dose was 658 per day. i could now walk again and do as i want.it saved my life. before with out this my body would go into spasity. my leggs would lock up to a point where the bones would almost break inside. so i know about pain. any little noise car horn anything would trigger the spasity. every two months id have to have the pump refilled. on top of the sps i got diebetes 1 from this. 1-28-13 ill be 44 years old. i live on long island, my nero is in brooklyn. in 2010 i started seeing another nero. here on the island that was supose to know about sps and baclofen pumps. boy did i find out how bad i was wrong. the reason i started seeing him was because the trip to brooklyn was too long, and all he had to do was moniter the pump. the problem started in 2-2012. im sorry anything other than that will have to be pm's. but i will ad this beware of the doc's here on long island about sps. thanks.

Hi and thanks for your input. Can u pm me the doc u saw. Also how we're u diagnosed w sps?p
Thanks

Debbie

Ps...I run a support group if u r interested

Hi, I live on Long Island and I was wondering if you still run the SPS support group. I was officially diagnosed withSPS high Gad positive in Nov. 2014.
Thanks

Patty I'm interested in chatting with you about sps. If you are willing please message me thank you