MS support

Sam Kenobi · **Sun Apr 24, 2005 2:25 pm MS support**

I've come to realize that I'm not the only one here who has been striken by MS, I think there are at least a couple other people. So I decided it'd be a cool thing if we could have thislittle support topic... talk about what we're going through with flare ups, medication, what have you. ANyone is free to post.

I've had MS for six years, I was diagnosed when I was twelve. It's taken me a long time, but I've finally accepted what happened to me and I've really decided to take it just as an obstical in my life's road that I either have to get past, or if that doesn't work out, just deal with the best that I can. Having MS has made me more grasteful for things in life like that my MS isn't as bad as itis for a lot of people and that I can get through my life as normally as possible.

My MS mostly effects my eyes. If I get to overheated, it becomes pretty difficult to see anythingin detail. However, I like being outside and ramming around, so not seeing in detail is just a toll, I suppose. The effect on my eyes also effects my balance, but I've learned that with slow practice, this can be managed.

Right now, I'm having a flare up that has pretty much taken all dexterity and feeling in my right hand. It's hard to write and hard to type, but I figure exercising those things is the best thing to do, to try and keep my brain and hand as in sync as possible. I'm not too worried, though, as flareups usally only last about two weeks for me.

Well, that's me in a nutshell, for now anyway.

lionhead · **Sun Apr 24, 2005 5:22 pm**

Uhm, i'm almost afraid too ask but, what is MS again?

Leo Wyatt · **Sun Apr 24, 2005 5:24 pm**

I might mispell it but it is Multiple Scholarious. I know I am wrong about the spelling. Am I right of what it is? My friend Dave has MS and so does my older sister

Sam Kenobi · **Sun Apr 24, 2005 6:30 pm**

It's basically a disease that causes degredation of the T-cels in the brain. From what I remember of the report on it that I did my sophomore year, the T-cells are what hold the structure of the brain together, along with some of the brain matter called myalin (sp?). Anyway, throughout time, this degredation causes legions in the brain, causeiing problems in the nerves that that part of the brain control.

madlilnerd · **Mon Apr 25, 2005 12:09 pm**

That sounds horrible, poor you!

You must be so brave to have to deal with that every day of your life. Does it affect mobility, or just mental problems such as memory?
Someone once told me that if you keep challenging your brain, it can help you cope with things like that. Or was that Alkziemers? I forget. I have a really bad memory.
Do you have fits like a epileptic, or do you live your life really normally? I wanted to ask questions like this to Stardatedave, but I was scared I would touch a nerve. I'm glad this thread has been set up. I'm curious about how the hman brain works etc.

lionhead · **Mon Apr 25, 2005 12:21 pm**

Ow, Multiple Scholarious. Yes, i have heard of that. Uncurable disease right? I'm sorry for you Triam_Paris. Don't know what else too say.

Sam Kenobi · **Mon Apr 25, 2005 9:05 pm**

Don't be sorry, it's just a challenge life has put in front of me... I like a challenge.

MS does effect mobility in some people. It really all depends on where the legions occur in your brain. For example... a lot of mine are in the eye area, that's the back and bottom. As for mobility, sure. Like I said, the problem with my eyes, while not very noticable most of the time to other people or to myself makes my balence bad and that does effect mobility.

As for seizure kinds of things... well, I don't really know anyone else with MS. But the closest thing I had to seizure kind of things were in the fall of my senior year. For about three weeks, every 5-20 minutes, the entire right side of my body would go into "muscle spasm" (that's what the doctors called it...) to me it just felt like every muscle in the right side of my body was flexing as hard as it could for about 20 seconds and there was nothing I could do about it. That included my face, tongue, my hand would kind of curl up... and there was nothing to do about it. I passed it off by just making a fist and leaning against something casually when it happened. BUt that was the closest thing to seizure that I've had.

Starbuck · **Mon Apr 25, 2005 9:46 pm**

Yeah, MS sucks. Most medications don't help, either.

Sam Kenobi · **Mon Apr 25, 2005 9:51 pm**

Well.. they don't if you don't take them.

I usually don't take mine. Mostly because it's by injection and though Im not afraid of the needles or the slight pain or the flu-like symptoms I'll have the next day... they're still injections. And usually... it just slips my mind. Especially at a rate of 3x a week.

I've taken to the hypoberic chamber at my chiropractor's. 1 hour every two weeks. The MRIs prove it's pretty worth it.

Starbuck · **Mon Apr 25, 2005 9:59 pm**

Thats a good point. They can't help if you don't take them.

Dirt · **Tue Apr 26, 2005 12:48 am**

Was thinking MS as in microsoft support, and yeah they do suck

Otter · **Tue Apr 26, 2005 5:04 am**

MS has taken my ability 2 walk or get myself in2 bed and more resantly even feed myself. I'm able 2 use my pc by having a board on my knee whilst sat in my wheelchair.

madlilnerd · **Tue Apr 26, 2005 2:58 pm**

As a kid, I was scared of people in wheelchairs after an incident in a theme park's haunted house when a kid with downs syndrome made a wailing noise and grabbed me, but I got over it a few years back by watching the paraolympics. I still won't go in haunted houses though. I have a bad record with being easily scared.

If the problems are in the eye area do they also affect your sight? i know a really cool blind guy who tunes pianos and plays jazz drums.

It must be hard to live with, but seeing it as a challenge is a cool way to look at it. If I believed in God, I might say he was testing your resiliance as a human being and showing you were special because you can cope with it, but I don't really believe in conventional God, so I'll just go and eat cookies.
Did you ever get really badly bullied because of it?

Sam Kenobi · **Tue Apr 26, 2005 7:38 pm**

Bullied? I haven't/ wasn't. I was always in the cool crowd... that is to say.. I still am.. lol.

It does effect my sight, of course. Mostly when I get over-heated, just like taking a walk or working out. For about an hour of that, I can't see in detail at all. Faces, until they're two feet in front of me are just a blur, words are clouded by... black floater things. It's hard to explain.

As for God testing me? I don't really look at it like that. Maybe in the Job sense... but I'm not going to renounce God because he gave me MS. However, my motto in life is "Everything happens for a reason, sometimes that reason is just hard to find." So yes, I do believe God gave it to me for a reason. Maybe to reach out to others who have it or others who don't know about it. Maybe because I want to inspire someone else to help people with MS out... which maybe I have. I have a friend at Johns Hopkins Med School and she's getting a degree in neurology because she wants to find a cure for MS. Either way, I don't know, but I do know that there's a greater reason behind it.

StarDateDave, I can't imagine what it's like to be stricken by the disease that badly. How long have you had MS? How do you cope with it interfering in your life?

Starbuck · **Tue Apr 26, 2005 8:46 pm**

lately I've been losing feeling my my toes, but it hurts. I don't know how to explain it. its like numb with pain.

madlilnerd · **Wed Apr 27, 2005 12:24 pm**

I was never in the cool crowd. I'm too honest. I would just go up to the cool kids and say "You're all stupid bimbos, you're going to end up working in Tescos and your strawberry lip gloss smells like mank... so tease me again for being a fat short nerd and I'll delete all your IT work."

Sometimes I wish I could experience stuff like having a disability. People say I'm horrible for saying that, but I think it would be quite an enlightening experience... I just want to be wise. Like an owl but bigger and less hooty.

Sam Kenobi · **Wed Apr 27, 2005 5:43 pm**

You should try being a hobo for a couple days. That would probably do it.

Wow. Your cool crowds must be losers. We didn't have any bimbos in our cool crowd. See... we weren't the "jock-cool" crowd, we were the actual ones. Where everybody is themselves. And everybodyt sees that you're yourslef and they think you're cool for it... that makes you cool. Basically... all you have to do is know without a doubt that you're cool. It all works out.

Republican_Man · **Wed Apr 27, 2005 5:50 pm**

Well, I'm sorry that you have MS, and I offer my support. I haven't really read any of these posts

but could you tell me if there's a cure? And if there is--or even if there isn't--I hope it goes away and you get better

Starbuck · **Wed Apr 27, 2005 6:41 pm**

there isn't a cure. but there are drugs that can help. one of them was recently taken off the market, I believe.

madlilnerd · **Thu Apr 28, 2005 12:06 pm**

OOOHH! Saw this in New scientist in an article about allergies:

B'Elanna Torres 7 of 9 · **Thu Apr 28, 2005 1:08 pm**

I found this on mugglenet.com today about MS. Thought of this topic when i read it, and wanted to post it here.

madlilnerd · **Thu Apr 28, 2005 1:09 pm**

/\ that's good of her. She makes loads of money.