The Long and Winding Road - Hi Everyone!
Posted: Thu Jun 15, 2006 2:08 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.
Cheers,
Craig
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.
Cheers,
Craig