In 1991 when I was first diagnosed, I was told there was no treatment, nothing even recommended. I was told to just go home and though it may never get this bad, to make plans for a being in a wheelchair.
So I squirreled away old shoes I would wear when in a wheelchair to demonstrate to others that I use to walk, that I was still in their club. And I signed up for motorcycle lessons.
Then the first “MS drug” —Betaseron— was approved by the FDA in 1993. But everyone was quick to remind us it was not a cure. Nothing yet could halt progression. The drug could only slow it.
Do I Start?
So began the advance of the “modern” age of MS medication and the word “immunosuppressant.” Yes, while everyone else works to boost their immune system, ours is out of control, attacking the nerves in our brain and spinal cord.
(There are now more than 15 drugs, sometimes called disease-modifying therapies or treatments, DMTs. See chart here.)
But it was still new, my doc at the time never even mentioned it, and I thought giving myself a shot was such an extreme, big deal since I didn’t have any symptoms. So I assumed I could wait to see if I got any.
Big regret. Once I started having symptoms, and started giving myself shots, it was apparently too late. The disease had silently progressed while I “was busy making other plans.” (John Lennon, Beautiful Boy)
I will always wonder if I would’ve started sooner, would I still be able to walk?
Why start them?
Evidence now says you should start disease-modifying drugs as soon as possible. I concur. What I learned is that you can never have a do-over in disease.
Often when you are first diagnosed, you decide you can treat it with alternatives to Western medicine. By changing your diet or taking herbal supplements, maybe.
And when you do, you feel better. It can’t just be placebo, can it? But you are forgetting two things.
One, you were most likely diagnosed with Relapsing-Remitting MS (RRMS), so while your doctor was determining what was causing whatever you went to her for, you probably went back into remission all on your own.
And two, it’s a neurological disease. Because you now have been told it’s probably RRMS, you will never again be able to judge your disease by how you are feeling.
Why stay on them?
Yes, these drugs are so expensive and generics are hard to come by. You may fear that drug companies are just being greedy. The news reports all the time about shady practices and all kinds of fraud.
But it’s your life. You may be able to get financial assistance from the drug companies, or even the MS societies. You must now recognize that you’re on an expensive journey not of your choosing.
You must trust your healthcare professionals, or find new ones, since you can’t necessarily tell if it is doing anything. And I’m not suggesting that you give up any alternatives you believe are helping too. Obviously ask your doctor first.
Please just know that if you stop to see if you will feel worse, you can’t just resume and get back to where you were.
- article Medications | NMSS
- video Guideline: Disease Modifying Therapies for Multiple Sclerosis | American Academy of Neurology
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