[re-post from fab40]
Well, it’s official, my MS has progressed faster than my neuro would like.
There are no real medications out there yet for primary progressive ms [ppms]. Most of the medications are for relapsing-remitting ms [rrms].
I asked what, if anything, can help me regain any strength or any movement in my legs. Even transferring from my chair to my bed or the tinkletorium is getting quite hard.
I had mentioned a medication last year with some serious side effects, death being one. There have been incidents of patients getting an infection called progressive mutifocal leukoencephalopathy [PML]. They have found that these people may have had PML before starting the medication so that may be the reason why.
The medication is called TYSABRI http://www.TYSABRI.com
It has not been tested on many patients with the more severe form like my ppms. My neuro has patients on it that have ppms and they have regained some to a lot of strength back. It can take 6mos to one year to see any results. It is a 3 hour infusion every four weeks 40 mins from my home.
I have a friend who uses it and he said his life has changed for the better, and he has been on it for over two years.
The referral was called in directly by my neuro so I should find out if I can try it in the next week or so.
I’m scared to death, but not trying something is even scarier. It’s only a matter of time before I lose complete mobility and am bed-ridden, so if this might help me to even be able to go back to using my walker in my home, it will be worth it.
Wish me luck my friends!
7 thoughts on “My Neurologist appt. 5-26-2011”
Oh, Tracy, Tracy…..good luck, blessings and hope. I’ll keep looking out for posts as to how the medication is going. You deserve every break going. Love ~Hazey XXXXXXXXXXX
Thanks Hazey!!! xoxoxoxo
this will work for you! You have the strength to get through this! Keep the fight going!!
You are ALWAYS in my thoughts sweetie.. I love you tons!! xoxo
love u tons too!!! xoxoxo
Yes!!…when I read this post on Fab40, I did a happy dance (wish they had little feet on these keys..:).
Keep us posted on every single detail, how you are feeling through each treatment, etc.
I am so excited for you I could burst!!!
Love ya!! xoxoxo
no bursting!! 😛
I’ll definitely keep you posted!! xoxoxo
I’m sorry to hear that your dr. thinks u have progressed more. I’ve read alot about ty and i really do hope it helps u. Yes, you have to try…doing nothing would be like giving up don’t ya think?? I’m saying prayers for u dear…I hope u feel better soon and please keep us posted.