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Hello!

Postby Boogshine » Thu Dec 03, 2009 10:49 pm

I'm 30 and found out about a year ago that I have MS. I found out because my right leg had been going dead, and getting a bit worse, over a period of about 2 years during which I did nothing because I had no pain. My right hand also had some "carpal tunnel" style issues a few years prior, but that was dismissed. etc. etc.

At this point, I'm interested in 3 things. This forum looks like an awesome place to air this stuff.

1) Building muscle into the right side of my body in order to delay fatiguing of the appendages. I'm almost willing to do illegal steroids at this point if it will help. Has anyone had success with pushing your body and getting results?

2) Liberation Treatment? I've heard about it and am quite intrigued.

3) Copaxone? I tried Avonex for a while but hated it, so I haven't been on anything since February. My neurologist thinks I should go on Copaxone, but I've since moved 800 miles away and haven't seen a doctor yet. Worth it to try? I don't care about frequency of injections - my wife stuck my 4 times over the weekend trying to develop phlebotomy skills.

Anyway, that's me. I've been out of work for a while but am looking to get back to it, only no working on the feet :( Hope to see some responses!

Matt
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Postby LoveActually » Fri Dec 04, 2009 4:09 pm

Hi Matt,

I can't give too much advice as I am recently diagnosed and learning about all this crap myself. With that said, I would NOT take illegal steroids. There are all different types but I believe most cause major mood swings and may no be worth the benefit, if any.

I would suggest going about it the natural way. Exercise & Health. I believe if you improve your health and strength, you will be better able to handle issues with mobility. Hopefully, your leg will allow you to exercise a bit each day.

As fas as Copaxone, I've been on it for about a month with no major issues but if I didn't think it was worth it, I wouldn't be stickin' myself every damn day. Everyone's opinion is different about every drug, it's really what you think will work best for you. :)

Oh, and welcome to TIMS. Sorry to meet this way. :x
October 29, 2009 - Dx with RRMS
June 22, 2010 - Dx's changed to Devic's (NMO)
January 4, 2011 - Dx w/Syringomyelia T4-T9, Migraines, and Possible MS (again - long story)
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Postby jimmylegs » Fri Dec 04, 2009 4:29 pm

hi matt, for me everything crashed in jan '06. i had some numbness before but did not realize the implications. major diet and lifestyle mods have kept me going without meds to date. lots of improvement.

there is a book called something like black patent shoes, dancing with ms. it's about a woman who has a series of serious relapses but forces herself back to functionality thru physical exertion.

i have always stayed as active as possible. after my first attack i was off work for 2 weeks but back on light duty as soon as possible. by march '06 i was back teaching skiing, although i stipulated 'no groups using ski poles' because i still had no position sense and couldn't hold them!

pretty much my only lasting problem is 'stocking and glove' numbness - i had both position and vibration sensory loss at first, but got the position sense back after a 3 day megadose involving b vitamins, vit e, and lecithin, among other things.
never had noticeable small fibre neuropathy (loss of pain/temp sensation).

in 2008 i got my level 2 ski instructor certification. right now i am employed as an outdoor educator and basically hike for my paycheques. maybe one day i will be more limited but i will have this under my belt by then, at least! as far as i am concerned, it pays to stay as active and healthy as you can for as long as possible!!!
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Postby Johnnymac » Fri Dec 04, 2009 4:57 pm

Hi Matt, I'm one of the other side of the coin you'll meet here, a caregiver. My wife was 30 when she was diagnosed, and is also primarily affected in her right leg, I can understand what you were going through. Sorry you're having to deal with this crap, try to keep your head up.

to answer your questions:

1) I wouldn't never recommend anything pharmaceutical without the supervision of your doc. Steroids are a big part of MS treatment in general to treat inflammation, save em for that. If you want to build muscle there are much better and more natural ways to do so. If you would like some general tips on building muscle just shoot me a PM and I"ll get you in touch with my boss who is also a certified personal trainer. I can say that keeping in shape is very important and something you should try to do.

2) Check out the CCSVI forums to get your fill of information on the Liberation Procedure and the science surrounding it. Lots of great stories and information there.

3) Courtney was on copaxone for quite a while but eventually switched to tysabri due to bad site and post injection reactions. I know people who have been on it for a decade though and have been fine on it.

Welcome, ping me anytime if I can ever help.
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Postby jimmylegs » Fri Dec 04, 2009 6:00 pm

OH YEAH and like jmac says, check out the CCSVI forum (try the 'stickies' to get you started).
patience is probably the order of the day when it comes to the liberation procedure. personally, i am working up to potentially getting scanned.
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Postby Bubba » Tue Dec 08, 2009 10:18 am

Welcome Boog! You'll find all the liberation treatment info you can handle here! I am with LA on the illegal steroids though, I wouldn't. You never actually know what you are getting and the side effects far outway the benefits in my opinion.
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