either way, it’s all in my head

i’ve been reading a lot lately about the vascular vs. autoimmune cause/treatment of multiple sclerosis. the vascular side seems to be saying that there have been only two studies showing it to be, essentially, a hoax and worthless, two studies that keep being dredged up and recycled as ultimate proof. the neurology side (which, let’s face it, has a LOT to lose if the vascular theory is proved even the least bit effective – neurologists and drug companies which will lose billions of $$$) apparently keeps trotting out these two studies as proof that the vascular approach doesn’t work.

the neurology side is entrenched and has a lot of time and experience and money invested in, and riding on, the continuation of the generally accepted idea that ms is an auto-immune disease, as do organizations like the ms society. but i have to say that from my personal experience and from what i’ve seen, the auto-immune approach has never stopped ms, or cured it, and tells me that it can’t be stopped or cured, that the best they can do it send it into temporary remission and slow it down. as far as they tell me, ms continues to be a progressive, incurable disease, and they are not entirely sure what causes it, how to treat it, or why a lot of the drugs they dispense work. (how many times have i heard, “this is a drug normally used for huntington’s disease. we don’t know why, but ms patients who take it SEEM to do better (whatever that means) when they take it.”) i’ve followed the typical course of treatments, all the way from rebif thru tysabri and now cytoxan, with some physical therapy thrown in, and i’ve continued to get worse – sometimes falling off cliffs, sometimes rolling down a gentle incline.

i’m not doctor (i don’t even play one on tv), but the only two therapies that claim to, if not cure ms, at least stop it cold, are the diet designed by the unfortunately named dr. swank, and the vascular technique designed by the also unfortunately named dr. zamboni. maybe we who live with ms are so anxious for a cure, or something better than “this seems work, for some reason,” that we grasp at straws. but i remember when i was first diagnosed and started working with a neurologist, he warned me that whenever i read a pamphlet or magazine about ms, to always check to see who had sponsored its research and publication. he said, and rightly so, that 9 times out of 10 i’d find a drug company name.

i don’t know. i am of the belief that there’s no going back, that once some function is lost, it’s lost. in any event, whichever side is right (and wouldn’t it be nice if it was the vascular side?) it’s all ultimately in my head.

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Author: Stephen

Stephen Harris is a writer, painter and a photographer who lives with his family in Maine.

2 thoughts on “either way, it’s all in my head”

  1. Steve you write so well , genius. Im happy and sad at the same time when I read your posts!!!! I don want MS, not now , not tomorrow, not a year from now… but I fear this is only the beginning for me…
    Eric

  2. I was very skeptical of the Dr. Zamboni thing at first. When arriving at my dx, they threw every test in the book at me, including a carotid dopler scan. I thought my neck was clean. Then my brother pointed out that the artery is the delivery to the brain and the vein is the delivery from the brain which is what Dr. Zamboni was concerned with. So now I am thinking plausibility here. I am a wait and see person and have never taken anything for my condition. My life has almost always been rife with activities such as walking, hiking, cycling and I think this is what makes my condition so mild. They don’t really know the cause of MS. If they did they would not have a problem in coming up with a cure. We MSers are all so varied in symptoms and abilities. I really hate to think that the pharmaceuticals can lord over the medical profession but it sure seems like they do.
    Stephen you are funny. It’s all in my head too:-)

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