#6 "Better Living through Chemistry"

I grew up in the '50s. I believed in science--still do. I fact I am such a believer in science that I wait excitedly for the next great discovery--the cure for cancer, diabetes, alzheimers and yes MS will be discovered soon. But soon is a relative term...if you are sitting in the back seat of the family car waiting to arrive at Grandma's house...soon can seem like a very long time.

You get the picture. It's simply not soon enough. So while I was waiting around for the cure to materialize--soon--I opted for the next best thing: slow it down! That way when they find a cure, not too much damage will be done.

But before I could start any treatment, I had to confirm I really had MS which meant a lumbar puncture--yup--the dreaded spinal tap. Now most people kind of sail through this process but a select few have a really nasty complication called a "spinal fluid leak" which causes a "REALLY BAD" headache.

[If you're squeemish, skip this paragraph--but if there is a lumbar puncture in your future, I would recommend reading it. Imagine you are fine if you are lying flat on your back. But if you lift your head up even just a tiny bit, it feels like some one has meat hooks in your brain and is pulling you back to flat. Not really an experience I would recommend--especially since it lasts about 3 weeks! There are things you can do to avoid it or shorten the duration, but you would have to know what they are and I did not. First--don't drive to another city to have a puncture done on a Saturday by someone in training ("how far in do I go? oops"). Second--don't listen when they say you can sit up and drive 3 hours home within a half hour of the procedure (remember it's Sat. and they have somewhere else they want to be)--but you don't want to be going anywhere until that little hole in your spinal column has sealed itself up. That might take holding still for a couple hours. If you do get the headache it will be very soon after the procedure--demand a blood patch--a tiny drop of your own blood which seals the leak and prevents the 3 week ordeal--better yet -- ask about the blood patch in advance. Forewarned is forearmed.]

So with the MS diagnosis confirmed, it was now time to start stopping it. What kind of MS is it and what treatment should I try? Docs kind of leave that up to you these days.

There are several forms of MS but the 2 biggest distinctions are that symptoms come and go-- that's relasing/remitting MS (RRMS) or symptoms come and stay and accumulate-- that's progressive MS. There are lot's of sub-categories and nuances but for this story, that's enough.

Since 85% of people with MS have relapsing remitting (RRMS), there is a higher concentration of effort being put into fixing that form of MS. Several new drugs have been developed to slow down the number of relapses (presentations of new symptoms) because relapses can leave behind some disability even after they "remit" or go away. So the theory is, avoid getting to the progressive phase of the disease at all. And since there are no drugs out there to stop the progressive forms of the disease like "Pimary Progressive MS (PPMS - progressing disability from the beginning) or secondary progressive MS (SPMS - which is what RRMS turns into if left untreated), what would you want to call your disease if no one was really sure? DUH. RRMS!

First up: Copaxone.
One little shot a day. Doesn't hurt a bit--going in--hurts like a crazy for 15 minute afterward--but hey--no pain no gain--right? Still I got new lesions on my MRI scans and new symptoms--just a little at a time--but they didn't go away. Like a little more unbalanced, a little weaker, a little bit dizzy. a little tingle here and there. So after 4 years, my neuro--a new one--said lets try Rebif. It is new and it might just work better.

Rebif--an interferon.
This is great I thought--shots only three days a week--different side effects and I was really tired of the every single day "burn" option. How bad can it be? Well let's see--I felt like I had the flu or a bad hang over 3 mornings a week. The shot hurt going in so I became increasingly reluctant to jab myself. And my skin was getting "tough" from repeated shots in the same place (there are only so many places on one body). To top it off, after 3 years with Rebif, added to 4 years on Copaxone, I had zero relapses and only one new brain lesion. I should be the poster child for the drug companies! By their measure of stopping relapses and brain lesions, I was perfect.

But I wasn't perfect. I could no longer grasp a pencil well enough to draw (I am an artist, remember). I could no longer walk across even a small room unaided. If I stood for more than 5 minutes I was completely exhausted. My husband had talked me into giving up driving (no sense in killing someone just because you need some groceries and I was having trouble gripping the wheel--let alone stepping on the brake--Yikes).

It was time to have a heart to heart--I will rephrase that--an unemotional and honest brain to brain discussion with my neurologist at our next meeting. He was apparently reaching the same conclusion because when I "walked" in, we both said simultaneously--"we need to talk". Really, we did. Yup. PPMS. Or at best SPMS. Only 7 years of giving myself useless expensive drugs with dangerous and unknown side effects. "Denial is not a river in Egypt" is probably a fitting expression.

So no more drugs. At least none labeled as a cure or a preventative.

So about my faith in science... it really hasn't diminished. I still think science will cure MS "soon." Stem cell research is on the move again after an 8 year roadblock. Wait a minute! Are those the same 8 years I spent enriching the pharmaceutical companies while stem cell research lagged behind? I resist anger, it sucks up energy... and I need energy to write this blog...