The Long and Winding Road - Hi Everyone!

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The Long and Winding Road - Hi Everyone!

Postby Craig445 » Thu Jun 15, 2006 3:08 pm

Hi everyone,

My name's Craig and I was diagnosed about 5 years ago. I turned 26 in May, and I live in the Toronto area.

I started Rebif-44 shortly after my diagnosis, and it kept me pretty stable for about 3.5 years, then things went downhill. All of a sudden I lost sensation in some of my fingers, developed some heat sensitivity, and had some gait issues.

After these symptoms I looked into complementary treatments. I started the Swank diet, supplements, and then LDN a couple of months later.

Things continued to get worse, though. I had a couple of other attacks which worsened my gait, coordination (on my right side), and I developed problems with fatigue.

My neurologist and I decided that I had probably developed neutralizing antibodies to the Rebif, so I stopped taking it. For about a month and a half I was on LDN alone (I thought the combination could be hindering the LDN's effectiveness), but if anything, I continued to worsen during this time.

Then, about a month ago, I got IV steroids for the first time, and the difference was like night and day. I also started on a chemotherapy treatment, Cyclophosphamide, which is like Novantrone except it doesn't have heart problems associated with it.

I'm still in the process of weaning myself of the steroids, but I feel much better. About a month ago, I could barely walk. Now, I usually walk without any aids, my fatigue is gone, my heat sensitivity is almost entirely gone, too.

Needless to say, I'm optimistic about the direction in which things are moving!

I know this is a long-winded post - a lot has happened lately. Anyways, I look forward to talking to you all.


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Postby Arron » Thu Jun 15, 2006 3:26 pm

Craig-- so glad to hear you're feeling better, and welcome to the site. It really is amazing the obvious difference a round of steroids can make. Now if they only had no side effects... ;)

Welcome again, we're very happy to have you with us.
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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Postby bromley » Fri Jun 16, 2006 12:19 am


Good to hear that you are seeing some improvements. Various chemo drugs are being used so keep us posted on how you do.

All the best

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