March 2010 Issue

Onward.  Many kind people have written to me about my ms over the past few months, and I really appreciate your concern and encouragement.  Several readers have asked whether I am taking any of the various interferon ms medications available, and the answer is no.  There are two basic types of multiple sclerosis (there are others, but they tend to be very rare).  By far the most common type is “relapsing-remitting” ms (RRMS), which usually strikes folks in their 20s, and is marked by bouts of symptoms interspersed with long periods of feeling relatively (or completely) OK.  The interferon drugs are approved for this kind of ms because they show some statistical success in suppressing or at least tempering the relapses.

The other main kind of ms, which is the one I have, is called “primary progressive” (PPMS), and tends to strike people a bit older.  Unfortunately, there are no remissions in PPMS —  you just get progressively worse.  Since PPMS is essentially one long, slow decline, and the interferon drugs have never been proven to slow or halt that slide, they’re not approved for treatment of PPMS.  That’s OK with me, because (a) they’re very expensive and I could never afford them, and (b) there are serious questions as to whether they actually do enough good to outweigh the risks of that sort of drug therapy.  I do take tons of vitamins and do my best to stay active. As of right now, I can walk or stand for about ten minutes before my legs hurt like hell, and after another five minutes they simply stop responding to my commands, which is very weird. The whole thing is weird.

Many cases of RRMS, at least as of now, eventually progress to something called “secondary progressive” ms, in which the symptoms of the disease become so constant, with no remissions, that it is, effectively, the same as primary progressive ms.  I think this raises a real question as to whether PPMS and RRMS are actually different forms of ms, or whether RRMS simply so frequently goes undiagnosed in early adulthood that it “pops up” and is labeled PPMS when the patient is finally so debilitated that doctors can no longer ascribe the symptoms to lack of sleep or depression.  I know that many of the symptoms that plague me now, such as leg pain, cramping and numbness, as well as severe pain in my eyes, actually periodically bothered me in my late 20s, but doctors never suggested testing for ms (although both are classic ms symptoms).  Oh well.  I’m actually glad I didn’t know.

Onward.  As I mentioned last month, if anyone has a notebook or netbook computer of relatively recent vintage that’s collecting dust in the corner, I could put it to good use.

Lastly, as usual, please consider subscribing to TWD-via-Email.  Your support makes this site (not to mention my sybaritic, go-go lifestyle) possible.

And now, on with the show….

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1 comment on this post.
  1. Frank:

    Sorry about your MS,aheavy load to carry.I also have a load to carry,it’s called fibromyalgia syndrome and it too is a nasty that life sometimes throws at people,I ache a lot and feel exhausted too.I am in Australia,the southern region and here we are in what you call”fall”,ie autumn-a beautiful time of the year.Winter officially begins in June.I think people in the US think we have an “outback’lifestyle with kangaroos bounding down the main street.Uh uh-we are a city of about 3 million,thoroughly modern(we even have running water)ha ha.I myself am 70 yrs old and well and truly retired.I enjoy your blogs so keep em coming.Hooroo for now,Frank.

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