Hi, I'm GWS

A forum dedicated to the younger people living with MS reflecting their unique concerns.

Hi, I'm GWS

Postby GreatWhiteSilence » Tue Aug 17, 2004 1:32 am

Hi, I'm 24 and in a few months I will no longer be allowed to come here I guess... :cry:

But I still have a few months, so I will tell about me and my MS.

Actually there is not much to tell, for I am hardly affected by it in the 5 years I have it now. I only have had sensory problems, meaning strange feelings in my skin and leg.

I was 19 when I got my first schub and that was also the meanest, but I recovered from it completely. I have had 3 or 4 of them(not sure) and the only thing that stayed is some kind of 'tunefork' in my leg when I'm jumping and similar things.

Although I do think it is slowly disappearing now, and I miss it already... :)
It kinda reminds me about that sword of Damocles that is above me, and makes me enjoy life even more, because I realise I'm really lucky to be this healthy considering the disease I have...
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Postby CCmom » Tue Aug 17, 2004 7:16 am

Welcome to the board, GreatWhiteSilence! I'm glad to hear you are doing so well. I do not have MS, but have a 16 year old son who was diagnosed 3 years ago. If I can ever get him to sit still long enough, hopefully, he will post here as well. We are also working on getting more young people with MS together at this site, so if you know of any, please spread the word.

Are you on any treatment at this time, or have you ever been? I'm sure others would love to hear more of your story. I know that I would. You've come to a great place, filled with hope and information, the necessities of fighting this battle!

Take care, and please come back!

Kim
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Postby GreatWhiteSilence » Tue Aug 17, 2004 8:45 am

Mom Kim, I think duct tape will do the trick, but be sure to tape his hands to the table, close to the keyboard, otherwise he can't type, but will be able to break lose... ;)

I'm not on any treatment, although I've had solumedrol once. I have decided I don't want any medication anymore. (Except maybe Antegren, if it proves itself outside the trials)

Stabbing myself with a needle regularly would really make me (feel) ill. And since I only have, like, one schub every year, with low impact, I don't think it is worth all the trouble and costs...

And I don't want the solumedrol anymore because my mom has osteoporosis, which means I have a bigger chance of getting it also. And I think you already know that meds like solumedrol are not good for the bone density.

I also read that some people grow immune to those meds, so it would also be a waste of my chances if I do get worse. It would be ashame if I am immune before it can really help me, wasting it on 'strange feelings in my skin'. I would rather use it to prevent troubles with walking and the like...

How is your son doing, if I may ask? And how are you doing? Raising a teenager must be a hell of a job ;) , especially when he is having such an unpredictable disease as MS.
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The Age thing

Postby treez » Tue Aug 17, 2004 10:35 am

GWS,

Hope you post on other forums on this site after your birthday. I'm relatively new to the site but it has been a good mood booster and very informative.

Treez
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Postby Arron » Tue Aug 17, 2004 12:55 pm

Welcome to the site... you can post as long as you like, in this forum and others ;) Maybe we should institute a new rule-- "if your first post on our site is before you reach the age of 25, then you have permanent posting priveleges to the 'Under 25 with MS' forum" ;)

In all seriousness, welcome to the site and please let us know what we can do to make it better.
Last edited by Arron on Tue Aug 17, 2004 2:38 pm, edited 1 time in total.
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Postby GreatWhiteSilence » Tue Aug 17, 2004 1:19 pm

Arron wrote:Welcome to the site, Samuel...
I'm afraid Samuel is not among the living anymore. I go by the name Anita, or GWS if you like :)
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Postby Arron » Tue Aug 17, 2004 2:39 pm

oops! got that fixed :)
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Postby CCmom » Wed Aug 18, 2004 5:27 am

Excellent idea, Aaron! I guess you would kind of call that "squatter's rights", as my Grandma would say! Post wherever you like, Anita. With your diagnosis coming at such a young age, you have alot to offer the other young people who will hopefully find their way here.

My son is doing just fine, Anita. (And I was thinking of super gluing his butt to the computer chair as an option, but I won't rule out the duct tape!) Most days, he deals with all of this much better than I do! I don't think it ever leaves my mind for a second, but I think he barely even thinks about it! I guess I can tell you a little about him, since he hasn't made his way here yet...(He is having pc problems at his father's house, truly...) He hasn't had a flare up in over a year. He's used two of the injectibles in the past, but now uses only LDN.

I think we are all excited about Antegren, but I believe we will do as you said, just see how it goes for a bit as long as my son is doing as well as he is on the LDN. It truly sounds very promising, though, and I think we have a right to be excited. I know what you are saying about the steroids. My son has had them several times, and he hates them. But some of his exacerbations have been so severe that he had to have them in order to bounce back.

Anyway, I tend to talk a lot so I will stop myself right now and cut this short. If I don't, when he finally checks this out, he'll say that I told you everything and there's nothing left for him to say....I can't do much of anything right in a 16 year old boy's eyes! Again, welcome, and thank you for your concern regarding my son! Take care!

Kim
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Postby GreatWhiteSilence » Sat Aug 28, 2004 2:05 pm

CCmom wrote:Excellent idea, Aaron! I guess you would kind of call that "squatter's rights", as my Grandma would say! Post wherever you like, Anita. With your diagnosis coming at such a young age, you have alot to offer the other young people who will hopefully find their way here.

Kim
I would be delighted if I could post here after my 25th birthday :) Young forever ;)

I myself think about it every day, wondering if the statistics are right about being pretty sure of a mild course of MS when you've had it for 5 years with very mild symptoms.

After all, it is an unpredictable disease. I just hope it will stay this way until there is a treatment that will keep it mild. Maybe Antegren, if it keeps its promises.

I still have a lot of things I want to do and I would hate my MS getting into the way...
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Postby Arron » Sat Aug 28, 2004 5:09 pm

I still have a lot of things I want to do and I would hate my MS getting into the way...


Well said... and I am rather confident that it will not.
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Postby Guest » Sun Aug 29, 2004 7:45 am

You are right, Anita. There is alot of hope on the horizon, Antegren just being one of these hopes! I know alot of people are really counting on this being the drug for them, a lot of people.

I know that you truly do think about this every day, but it is great that you have such a healthy perspective on things. My son is the same way...In fact, his outlook is so good that I can't seem to get him to this board to post - he's just too busy. (Actually, his father has limited his computer time drastically...) Before long, if he doesn't post, everyone is going to start to think my child is "imaginary". :?

Hope you have a great weekend! Take care!

Kim
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Postby GreatWhiteSilence » Tue Aug 31, 2004 1:30 pm

Now, I'm pretty happy now that I have read that article that was posted today.

It says that I am pretty safe now that I have reached the 5 years with low(or none, in my case) disability. It says that the worst thing that can still happen to me is reaching a EDSS of 4, which means a bit disabled but I can still walk unassisted.

But, as long as I don't have to get al kinds of stuff to make it possible to live in my own home I'm happy...

Now I just have to hope that I am not that exception that confirms the rule...
Man, unlike the animals, has never learned that the sole purpose of life is to enjoy it.
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Postby Rita » Wed Dec 08, 2004 1:17 pm

Hi everybody, first of all I beg your pardon for my English, I’m from Spain . I’m reading all your posts for a long time ago, and I have to say this is the best forum. I enjoy with all the big information I can get from you all.

I’m not a MS suffer myself, my daughter is affected. She is doing well for the moment, no troubles by now. she begins the same way as GreatWhiteSilence, in her right leg with 20 years old and now is 25, so I also hope she has in a benign course of the disease.
I could understand you Ccmom, and I’m so glad your son is doing much better than before.
I’m all the time reading everything about MS, looking for something could lead to a cure, or at least a chronic benign disease without consequences.

Love and hope for everybody

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Postby Arron » Wed Dec 08, 2004 3:39 pm

dear rita,

bienvenidos y gracias :)

Wishing good health and our best wishes to you and your daughter!
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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