Hello everyone, got room for one more?

[mick_b]

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

[jimmylegs]

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!

[mick_b]

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

[Arron]

Hi Mick, welcome aboard and we're so glad you decided to say hello after all these yars.

[jimmylegs]

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!