Hello from beyondms

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Hello from beyondms

Postby beyondms » Sun Nov 12, 2006 1:11 pm

Hello to everyone on this board,

I am a recent lurker with a lot of experience with MS. I am a 35 year old Montrealer who was diagnosed roughly 10 years ago. I was offered to the opportunity to be part of the CHAMP study giving Avonex to people with a one time episode. I was subsequently diagnosed as definite MS after a bout of optic neuritis. My initial symptoms was a funny feeling in both legs that last months.

I have slowly progressed in the last 10 years. I recently decided with my neurologist to get off Avonex since we didn't feel it was doing me any good. I suspect that I am now progressive MS even though my EDSS is 3 and I can still walk. My only symptom is that my right leg gets weak when I walk a few blocs. I can't tap my foot on my right side as fast and I can't walk on my tippy toes.

I have followed some dietary changes for years. No fatty foods, 4,000 IUs of vitamin D, 2 g of fish oil, vitamin C, etc. I have also recently started taking antibiotics (100 mg of doxycin, not sure if it is enough).

What else? I am married with no kids. I love my wife but she is having a hard time dealing with my disease. Sadly, I also recently got dismissed from a quasi-government job and I believe it was a clear case of unjust dismissal and/or human rights discrimination. (I will discuss this topic in a separate post).

I think I can offer all of you a lot of excellent information. My neurologist - one of the best in Canada - calls me the consumate researcher. He is amazed at what I find and how I keep abreast on the latest trials.

I look forward to the day where we all are beyond MS. This disease has ravaged all facets of my life. It has made me stronger but it also has taken away some of the best years of my life.

I now want to help people. This is why I joined this community. I am a born skeptic. I do not believe in any quick fixes when it comes to MS. I believe in science but I am also weary of many claims. Why do I believe in science and pharmaceuticals? Not because I think big pharma cares about us but they do care about profit margins (as Adam Smith remarked, "we do not rely on the butcher's benevolence but on his self-love").

Anyways, this is my introductory post. I will folow-up with lots of pertinent information. Please feel free to comment.


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Postby Lyon » Sun Nov 12, 2006 4:16 pm

Last edited by Lyon on Sat May 07, 2011 5:36 pm, edited 1 time in total.
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Still pretty impressive

Postby merlin26 » Sun Nov 12, 2006 5:31 pm

It's still pretty impressive that your EDSS score is only a 3 after 10 years. I'm currently at a 2.5 and i've had MS for 3 1/2 years. Of course I haven't taken any drugs for it but I am part of the Tovaxin study and shall be getting my first infusion in a few weeks. Allow me to welcome you to this board and I look forward to reading your posts. It sounds like you're quite the student when it comes to researching this dreadful disease.
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Postby elaine » Sun Nov 12, 2006 6:01 pm

welcome beyondms
i don't have much to offer so i don't write much :oops: , but i love reading all the information here.
And it sounds like you will have alot to add, so thanks in advance
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Postby beyondms » Sun Nov 12, 2006 10:28 pm

I thank you all and I look forward to sharing and learning from this great community.

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Postby Arron » Wed Nov 22, 2006 7:41 am

a belated, but no less hearty, welcome to the site!
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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