My Topic Wants List is dwindling....

[sllowe]

My MS Topic Wants list is dwindling - anything you want me to dig into? You know I'll be all too happy to find something good for us.
Spill your wants :)

-Shell

[sllowe]

Jifr,

Yes - I do not believe BG12 will be available before next year. Your doc may suggest something in the interim.

I'm working on compiling some of our past posts regarding fatigue, with the addition of off-label meds. It's something that encompasses lifestyle and therapy in addition to meds (like you mention Mary) so I could find something to compliment the topic in general.

Debgen - will work on that too - if even pulling the info we already have on the health pages....sound like you are having your fair share of pain with that and it's seriously altering you. I commend you for keeping at your therapy, and the combo of meds.

The SCI literature/docs is excellent advice Mary - I know for certain they will work with the combo Debs on.

It's great you are getting the botox Deb. Something SCI patients have to fight a good fight with the insurance companies for. Sounds as if your docs are really working to help this - maybe I'll come across something additional you can bring up to the docs.

Thank you all so much for stating your Topic Wants here. It is hard to keep things organized on an open forum like this. So, I'll do my usual, and title it Topic Wants """ and then the topic so we can find it easier. I encourage all to do this for topic specific discussions. Just easier to search for key words.

Keep  em coming...
-Shell

[twopack]

Lots of the problems members are asking about here could be addressed by a physiatrist (physical medicine specialist).  I'd specifically look for one who cares for lots of people with spinal cord injuries.  They are the docs with special training in how to manage bowel routines for people with no control.  They can also balance drugs and therapy to minimize spasticity without constant drowsiness.  These are things they have perfected from experience with patients rather than in classrooms.

These docs might be easiest to find around VA hospitals.  Unfortunately, lots of returning soldiers are preparing to live the rest of their lives with these issues as well.  

Maybe you could do something about the value of this specialist for PwMS Shell.  They are the next best thing to a good MSologist, imho.  As a pair there's nothing better.

I think Lulu made a Health Page last year about ways to deal with the heat.  She shared what she had learned at a web- or tele-seminar and then added in ideas from our community discussion.  I'm not sure if that is one of your links from earlier.

I don't know much else about fatigue medications.  I just wrote that up pretty thoroughly last week.  If fatigue persists Laura, you may need a doc who can re-evaluate your present medications.  It could be you are taking something (or several somethings) that need to be adjusted.

Thanks for your generous offer here Shell.  I know some of these things have been rehashed lots of times.  They can just be hard to find.  It seems we always need more Health Pages.  

Mary

[debgen]

Hi Shell!
You are so wonderful to do all this helpful research for us! I would like more information on help for severe leg spasticity. I take Baclafen and Zanaflex daily as well as Botox shots in my leg every 3 months. I work out daily and go to physical therapy for an hour each week. All of these things help but the spasticity in my left leg stil gets so stiff at times that I can hardly walk :(  If you can find any info on other treatments that would help, I sure would appreciate it!
Thanks,
Deb

[Jifr]

Ahhh.  This is a nice post!  :-)

Ditto on the Fatigue question.

I have a neuro appointment on Monday and we're at the "Well, what do we do now for a DMD"?!  I was trying to do some research today on the status of the BG12 FDA review before my appointment so I can ask about it.  Do you know anything about that?  

[yorkieville]

Never mind, I got it! :)

[yorkieville]

Darn! I can't access the article!