glad to find this hope others do too!!!!!!!!!!!!!!

Glad to see you made it Christine!

So sorry to hear about the tradedy you posted. Life is too short and we sometimes taked it for granted. It makes our problems seem at bay when we hear of others suffering so.
I am sorry about your problems too, what happended? are you in need of a cane?? of was it a one time fall?

I use a walker all the time and a scooter outside. I wanted to ask your professional insight. What do you think of stem cell using adult stem cell. I have one lesion in the spinal cord that is about 1 and 1/2 inches long between the shoulder blades then one small one tiny one in the brain. I have lost so much mobilty and have been tested for devics and am clear of that. My doctor said in the future if they perfect stem cell i would be a canidate for it. That gives me hope!!! I need hope as I am on 1/2 dose novantrone and copaxone treamtent. I don't know if he is going to continue novantrone anymore as we need to discuss that now that I am on copaxone. I jsut want to get better. I have had problems and he has given me two doses of steroids that start with a "d". can't remember exactly the name but they are remarkable. How I wish there was something out there like steroids that we caould take continually. I can do the bike peddalar when I am on them and feel so much stronger. What a difference.

well I look forward to your insight and appriecate your freindship may be someday we can meet. Have you heard anything from Mary??? Hugs, Christine

Mary? Not sure about whom you are speaking.

I fell last August (foot drop) and broke my foot in 9 places. Because I cannot feel that foot normally (due to the MS) walking on it to rehab it, caused multiple additionoal fractures (+/- 36). I've been on crutches for a year. In an AFO since February. A bone growth stimulator for three months starting in February.

The bones are thought (by the foot surgeon, orthopedist, neurologist and PCP) to be so porous because of two years of IVSM while I was on Avonex several years ago. Despite Fosamax, Calcium, D, Magnesium, Repeated MRI's of the small bones of the foot, hand, wrist, ankle, and ribs show continued deterioration of bone. I have been told that high dose steroids can see this after effect for years in people my age and gender.

BTW: there is encouraging data recently released on the effectiveness of Copaxone and Novantrone used together.

The bones are thought (by the foot surgeon, orthopedist, neurologist and PCP) to be so porous because of two years of IVSM while I was on Avonex several years ago. Despite Fosamax, Calcium, D, Magnesium, Repeated MRI's of the small bones of the foot, hand, wrist, ankle, and ribs show continued deterioration of bone. I have been told that high dose steroids can see this after effect for years in people my age and gender.

How old are you? I am 50. I am so sorry you are suffereing. Wil you need to use a cane or something like a walker? Is there any warning that you are going to fall?

What treatment are you on now?


Cherie, I have been on continue steroids and hate them because I fear what you are talking about in weakness. I used to get monthly dose IV but now oral each month since June. My dr said this is the last round. So he hopes it will help. Ijust started copaxone a few weeks ago and heard to be patient it takes at leat 3 months. Hope to get better.

BTW: there is encouraging data recently released on the effectiveness of Copaxone and Novantrone used together.[/QUOTE]

Christine,
I'll be 54 next week. The thinking by many of the MS neuros on the Consortium is that it is acceptable to give women at or near menopause steroids to treat a flare but not to give more than two or three grams a year if possible. At the same time they try to support the bones by giving Fosamax, calcium, D, magnesium.

I've been watching for some written guidelines to come out on this protocol but have not yet seen it. When it is weritten or I come across it, I'll try to post here with the citing.

There are other meds now coming into favor for treating flares that do not have a bone wasting component. CellCept is one of those. It came to us from the transplant arena as an antirejection drug and is taken orally twice a day for 6 months to a year. Main side effect appears to be loosing of stool for the first few weeks (for some that's a real plus). In the old BT, xo had several articles posted on the validity of that therapy. My current neuro is now using it in most of his female menopausal patients rather than depending on steroids.