I feel compelled

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I feel compelled

Postby HDragon » Wed Sep 30, 2009 7:17 pm

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.

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
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Postby RedSonja » Thu Oct 01, 2009 1:42 am

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.
Bibo ergo sum
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Postby LoveActually » Thu Oct 01, 2009 1:45 pm

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'.
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Postby Loobie » Thu Oct 01, 2009 3:50 pm

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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