Hello everyone, got room for one more?

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Hello everyone, got room for one more?

Postby mick_b » Wed Aug 02, 2006 11:00 am

Hello everyone, got room for one more?

I’ve visited this forum many times over the years but this is my first post. I think there is a great bunch of people here and I wanted to say thanks for all the posts. It really does help. I may have some experiences that could help others and I’ll watch for opportunities.
My name is Mick (yes, like the mouse only shorter).

I’m in one of those statistical minorities; 50ish male dx’d with ppms in 2001 (after limping for a year). I’ve been thru a number of neuros (first one couldn’t read a spinal tap lab report and missed the fact that there were 3 “O” bands). I finally went to the Cleveland Clinic with all my info and was diagnosed with PPMS in about 30 seconds. Hmm?

Anyway, I tried Novantrone.My GP stopped it after 3 doses and a 20% decrease in heart function. I don’t know what would have happened if I’d kept going? So now I don’t take anything (except a very careful diet) but I have a very good and supportive Neuro and GP. I’m now thinking about trying tysabri, any thoughts ?

I know this ailment is anything but predictable but I’m wondering if I dare to consider that it may be leveling out? Nothing seems to be changing (mri etc.), right side still works good. Has anyone had ppms and stopped getting worse after 5 or 6 years?

Reading about possibilities and statistics is not that helpful. Hearing from real people would be.

Thanks for being there, hope I can contribute.

Mick
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mick_b
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hi mick :D

Postby jimmylegs » Thu Aug 03, 2006 4:15 am

hey mick! welcome welcome! that's great that you don't feel like you're getting worse at the moment. i think there are plenty of ppl here for u to commiserate with! sounds like you had a way tougher time getting a dx than i did but i'm like u in that i am treating mine with diet (and some vitamins)

i'm a newbie still working on pulling out of my first attack so i can't offer any perspective on primary progressive or rr or anything sorry :( but there will be lots of help to be found here i'm sure, good luck!
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Thanks

Postby mick_b » Thu Aug 03, 2006 9:53 am

Jimmy –

Thanks for the reply.

I take a bunch of vitamins also. I noticed improvements after I cut out all the junk. My body probably has been needing better nutrients for decades. It’s too bad I had to get ms to figure it out. Oh well, better late than never I guess.

Thanks again for the welcome.

Mick
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Location: Western NY

Postby Arron » Thu Aug 03, 2006 7:40 pm

Hi Mick, welcome aboard and we're so glad you decided to say hello after all these yars. :)
Disclaimer: Any information you find on this site should not be considered medical advice. All decisions should be made with the consent of your doctor, otherwise you are at your own risk.
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nutrients

Postby jimmylegs » Fri Aug 04, 2006 12:56 am

no prob mick and MAN do i ever hear ya re: not good enough nutrients for decades! same page exactly. but ya at least you get a heads up even if it is a pretty crap one!
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