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Multiple Sclerosis Message Board


Multiple Sclerosis Board Index


Just to offer some more food for thought. SOME of the DMDs, like Interferon and even Copaxone, have been on the market for over ten years now and the studies are much longer than what was quoted. Some of them, are newer, and I would agree, there is no long term data.

As far as the comment that DMDs only help for the first 3 years. "I have read a great deal over the years and they all still tell me the same thing...they can help slow progression but only truly effective for the first 3 years." There has never been a published review of this. And, having been dx for 10 years myself and originally put on Rebif for the first 5, I would argue that it kept me excaberation free for 99% of that time. The 1% was caused when my body developed antibodies to Interferon (Rebif) and started acting against me.

From that point, I have been on almost every DMD on the market and have continuously taken low Dose Naltrexone ( a NON- FDA approved MS drug used in Europe and Australia as a DMD). Let me not forget to mention that I was diagnosed with over 50 lesions on my brain- not exactly a "small" case of MS to be diagnosed with.

Over the years and over 8 DMDs, I have over 100 lesions on my brain. I have zero symptoms. I have never missed a day of work. I am 100% able-bodied.

One could argue that obviously me being on something hasnt slowed down the disease- I gain lesions by the year. (I know this because I do have MRIs each year and I do so to see if the medication is working) BUT I would argue that if I have no symptoms and no dissability- the LDN or any of the other drugs Ive used are keeping me going from a physical standpoint. Which to me, is MUCH more important.

Im also going to argue that MRIs and other "tests' which the doctors perform do actually do something. They give us statistics and studies, which hopefully one day will help to CURE MS. Without understanding this disease, without knowing who is likely to progress or even develop MS, without the statistics of what each drug does, what side effects it has, how it helps or doesnt- all of this is research towards a better future for our next generations. I wouldnt wish MS on anyone...but Im certainly glad that I was diagnosed in an age where we have drugs to help stave off relapses and tests where I wasnt subjected to sitting in hot water for an hour in order to see how my body reacts! (yes, before MRIs, they really did do that).

To take a DMD or not, to have an MRI or not- these are personal choices and no one is forcing (or even suggesting ) that doing so is the "right" thing to do. But having choice is good....and being part of a bigger study, the study of MS and how to cure it- is something Im glad to take part in.





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