[Kitty]

I got this information in an email and thought I'd share it with everyone here:

http://www.mscare.org/cmsc/index.php

[SandyC]

Thanks Kitty. Jim and I found the presentation on muscle spasms very interesting. We think we're going to talk to Jim's doctor about the baclofen pump or at least get Jim evaluated for it. I didn't know they give you a test injection before they install the pump to make sure it will work. Thanks!

[SallyC]

Thanks Kell, Interesting about the protein running around freely in our spinal fluid..

When I was 1st dx, Neuro said the protein in the fluid is one of the signs of MS....I guess this is new info though....good to know...I hope it helps find a cure.

[weegot5kiz]

so they either find something to combat this renegade protein? or what? be able to find MS easier if this protein is present, ? interesting article, hope they are able to use this info for a surer test and or a vaccine, wouldnt that be great for the future

[tovaxin_lab_rat]

Originally Posted by SandyC

Thanks Kitty. Jim and I found the presentation on muscle spasms very interesting. We think we're going to talk to Jim's doctor about the baclofen pump or at least get Jim evaluated for it. I didn't know they give you a test injection before they install the pump to make sure it will work. Thanks!

One of the guys in the Boise MS group was just approved through the VA for the baclofen pump, Sandy. He's getting it put in either this week or next. He's SPMS and full time wheelchair.

If you want, I can put you in touch with him for some information.

[SandyC]

Jim's doctor said no. He said they like to wait and make sure all other avenues have been exhausted before they even consider the pump. He said they would like to see more ambulatory patients who can stand somewhat and/or non-ambulatory patients who's spasms are so severe medication hasn't helped before installing the pump. He feels Jim is getting some relief and wants to see Jim stay on the Sinemet longer before that is talked about. He up'd his Sinemet to three times a day but wont go for more because it has a saturation limit and will stop working at that point. He said he has three patients using the pump and each has their own set of problems and wants to wait on Jim going that avenue.

So, we wait.