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MS Update

Posted Oct 16 2013 3:51am
Been having some troubles recently with extreme fatigue and some muscular freeze-ups. Last Saturday, in particular, I became really profoundly fatigued. I went to meet my friend, Mike, around noon for coffee, as usual, but soon realized that I really wasn't functioning very well. Kind of felt like I was buried under several heavy blankets or something. Found myself searching for words, trying to get through full sentences, practically falling asleep while talking. Mike noticed this, too, and wondered what was wrong with me. It was the first time he had seen a clear attack of the MS short-circuitry.

So I drove on home and proceeded to sleep for most of the day and most of the night, waking up a half dozen times to a kind of buzzing sensation all over, especially from my feet to my knees. It felt like if I didn't get up and move around, I might never get up and walk again. So, I got up, walked around, but soon hit the mattress again and fell back to sleep.

This was disappointing, as my wife and son were both out for the weekend, she in Makassar and he in Canggu, and I had intended to go out and paint the town in mild shades of gray (the best I can manage these days even at top form), but instead I slept.

The next day was a little better, though just a little. Still felt muffled and flat. I actually made it down to Sanur for a beer, but the fun ended there, as I found myself falling asleep halfway through. So back home again, back to bed. Woo-hoo!

Feeling much better now, on Wednesday, except for a persistent gripping of the muscles in my shoulders and neck. Wish I had some meds for that, but I don't.

In a related matter, I'll mention that I received an e-mail recently from the good people at Avonex.  Dear Richard .... They're aware that I don't take Avonex anymore, and they just wanted to remind me of how wonderful it is. That's fine. It's a business, right? Like any other. And they want their money. But the thing I found inappropriate, as well as rather irresponsible and insensitive, was how they went on to assure me that while one may not be aware of the progression of lesions while off medication (i.e., Avonex), it is occurring and doing damage that will no doubt be felt in the future. Thanks, guys. While on Avonex, I was not only sick to death for an entire year, but my symptoms from MS were much more pronounced than they have been during the four I've been Avonex-free. But now I know, thanks to your gracious concern, that I'm really not well after all. It's merely an illusion.

Well, so be it. I'd rather feel well, when really I'm not, than feel one step away from death due to the effects of Avonex.

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