I was diagnosed in the Fall of 1999, but had my first symptoms in the Fall of 1991. I was symptom free for 8 years. I took 2 or 3 months after my diagnosis to examine the different ABCs available at the time. I read multiple journal articles and went through the doctors prescribing information with a medical dictionary and a fine tooth comb. My discovery of this information was quite accidental. I was given the glossy marketing pamphlets by my neuro and I just happened to notice that there were pockets in each half of the brochures which were almost hidden. I wound up choosing Avonex. It seemed like the lesser of the three evils (they're probably all equally evil). My reason's for choosing Avonex were the once per week injection, the absence of injection site reactions - Betaseron's prescribing information described these as "injection site tissue necrosis", and the fact that Copaxone was found to be clastogenic in a mutagenesis assay meaning that it causes breaks in DNA. I suspect that the lipoatrophy problem associated with Copaxone might be linked to apoptosis (programmed cell death) induced by its clastogenic activity.
Anyways, I was on Avonex for a total of 10 years. The first year was very difficult as the side effects were considerable - fever, chills, shakes, loss of energy, etc. The side effects usually only lasted for about a day and I found that they were more manageable if I injected midday as opposed to in the evening and used ibuprofen instead of Tylenol. Around 2 years or so, the side effects weren't all that bad anymore.
I also investigated dietary changes as well as supplements. I found lots of anecdotal recommendations published in various books. However, I am a "show me the data" type of person and I started digging my way through the PubMed database and read many full journal articles. I eventually wound up with a supplement regimen that includes omega-3 fatty acids from fish oil, vitamin D3, R-lipoic acid, turmeric, green tea, calcium, magnesium, zinc and flax seed. I have also experimented with acetyl-L-carnitine. In the past it has helped reduce my cog fog and fatigue, but it isn't helping so much now. I've also been experimenting with cinnamon lately but that's a long and partially unrelated story.
Adding to the supplements, I tried to eliminate some proinflammatory foods. I stopped consuming all trans fats and try to minimize saturated fat. I have also greatly cut down the amount of sugar I consume. I noticed a big change after cutting out sweetened yogurt. High sugar foods now seem unappealing to me. Note that I still consume a bit of dark chocolate, 70% cocoa or higher, from time to time in moderation.
I have felt that I have been slowly progressing over the last few years. I now use a cane since I have pretty bad foot drop. I stopped taking Avonex last September since I was tired of it and also felt like it wasn't doing any good any more and was probably hurting me more than helping me.
If I could go back in time to my CIS that was undiagnosed in 1991, I would do the diet and supplement changes that I've described above. I would engage in a rigorous exercise routine and maintain it religiously. I often feel now that I'm hanging from the proverbial knot at the end of the rope, but that the rope keeps stretching. With MS, we have to fight for the privilege of standing still. If we don't, the rip tide will wash us out to sea. The water is noticeably deeper now and doing an exercise routine now is difficult due to fatigue and loss of muscle tone.
I wish you the best with your decision. People are now diagnosed earlier and earlier in the disease process. I experienced 8 years of clinical remission without doing anything different. If you read enough personal experiences, I think that you'll find that an 8 year remission is not unusual. I have read of people having even longer periods of remission, up to 15 to 20 years. Had I been diagnosed and put on one of the DMDs, it would have been reasonable to attribute the 8 year remission to the medication. However, I suspect that if I had started the dietary changes and supplements back in 1991, then the remission would have been even longer.
I currently feel a bit jaded by the DMDs and no longer feel that chronic immune suppression is a valid treatment paradigm (sure, corticosteroids such as prednisone can shorten an attack by inducing apoptosis in white blood cells, but long term use doesn't seem to have much impact on progression). My current hypothesis is that MS may be a neurodegenerative disease with a component of chronic immune activation in susceptible individuals as opposed to one of autoimmune etiology. After having read much of the evidence surrounding the CCSVI hypothesis, I suspect that it will pan out to play a large role in the disease process. Researchers have repeatedly published over the last 20 to 30 years that MS patients have reduced cerebral blood perfusion. However, it seems that few have asked why this might be the case until recently.
Entropy is maintenance free.
Close your eyes and press escape three times.