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Patients Multiple sclerosis
New treatment can halt aggressive multiple sclerosis
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Juliette
Good advisor
Hello,
Well, this may be an exciting new treatment but it could only be used for people who are having an exceptionally bad time with M.S!
1 in 24 people died and 1 in 24 ended up in intensive care! I do have the dreaded disease but I can still walk, albeit not so well in the last four or five years but I have had M.S. for 30 years during which time I've had two wonderful kids so I definitely would not have risked trying it!!!
Juliet.
Noonoos
My son, who's only 27 has been diagnosed for 20 months now with PPMS. He's so bad he's on the brink of becoming completely dependent on an electric wheelchair. He's been fortunate enough to be offered the stem cell treatment which could start in a couple of weeks. Although we are seeing the stem cell team next week, we know of no-one else who's been through it so it's into the unknown. Scary times ahead.
Juliette
Good advisor
Hi Nooos,
Have the doctors told your son that he won't have any remissions? I was diagnosed at 21 and have NEVER been told which type I have!
Anyway, recently my mobility has been getting worse and then, all of a sudden, after 30 years, I've had a remission and my walking has become much better (at times!). So, you never know, it might not be ALL bad!
Good luck to him xxx
Juliet.
Noonoos
Following several MRI scans it showed many plaques covering his brain and spinal column. He's never had remissions, just a rapid progression downwards!! They diagnosed him as Primary Progressive due to the speed and severity of his MS. He really has nothing to lose. It's going to be the hardest thing for him to go through but he has huge support around him. Thank you for your good wishes. I'll keep posting on here as we go through this journey to help inform others as we have found nothing other than what the doctors have told us. X
Unregistered member
https://bigmcdoogie.wordpress.com/2016/06/17/a-mountain-that-must-be-climbed/
Noonoos
thank you for that link. Very interesting and I'll be following his blog closely. Feels like you're the only one going through it sometimes.
Unregistered member
You're welcome. It's actually me; should have said as the different user names don't make it obvious. :-)
Noonoos
Haha. Well hello then..... he should hopefully be being admitted today. Just have to wait to ensure a bed is available. They still haven't done the required lumbar puncture so they're waiting to see if he can start his chemo tomorrow and have the LP later. Getting nervous now...
Unregistered member
I'll be updating the blog later today. I'm now off Tysabri for 3 months. It's very hard. I see the specialist for the first time in 10 days.
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Gilda
Community managerGood advisor
The Irish Times