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
I feel compelled
I feel compelled
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
very aggressive course
EDSS 3-4.5
(6 months prior to diagnosis was a 0)Rebif
LDN Monthly solumedrol Diagnosed May 2009
- LoveActually
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- Loobie
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Check out http://ldners.org There is a shit pile of LDN iformation on there and it was made by one of our own!