This Is MS Multiple Sclerosis Community: Knowledge & Support

Hello all,

I'm not a regular poster on any ms site. But I feel compelled to tell my story as it may provide help to others.

I was diagnosed with a very aggressive and progressive form of ms in June of this year. My prognosis was not good.

In only a matter of 6 months of progressed from an EDSS of 0.5 to 4.5. This means that I went from running regularly to having a difficult time walking 5 city blocks. Stairs were possible unaided, but certainly challenging.

3 months later I am no at about a 3 on the EDSS scale. Possibly even a 2.5. What happened?

I am not really sure, but I have some candidates.

I started on steroid pulsing - 1g of solumedrol 5 days each month. I did this for 2 months and noticed a drastic improvement. I also started on 3mg nightly of LDN.

I have now been off the 'roids for about 1 month and I'm doing very well. I also started Rebif about 7 weeks ago.

I don't feel the Rebif is doing anything, but I continue to do it so that I can qualify for future medical studies.

If the Rebif isn't helping, and now that I'm off steroids and still doing very well, I can't help but think it may be the LDN.

I just started on 4.5mg nightly.

Something is working, and I am very happy. I thought I would be in a wheelchair by now. I know this is still a very real possibility - however I am enjoying my mobility while it is here.

If you are diagnosed with an aggressive and progressive form of the disease, maintain hope. And try LDN.

Cheers,
Hayden

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relapsing progressive MS
very aggressive course
EDSS 3-4.5
(6 months prior to diagnosis was a 0)Rebif
LDN Monthly solumedrol Diagnosed May 2009

Oh, well done, good for you.

I hope it keeps on working. Keep us informed, please. Nice to get a post telling us someone is getting better.

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Bibo ergo sum

Thanks for sharing and I'm happy to hear something is making you feel better.

Now I need to go and educate myself. If I do come back with the definite diagnosis, I at least want to know what the hell EDSS is and where I stand on the 'scale'.

Check out http://ldners.org There is a shit pile of LDN iformation on there and it was made by one of our own!

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http://myhopefuljourneyintoactualmsreco ... ogspot.com