Sunday, August 17, 2008

Conflicting Reports About Conflicting Reports; Should You Be Worried?

If there is one thing everyone can agree on about MS it is that they cannot agree on one thing about MS. This person thinks a, b, and c are caused by x, y, and z. This other person thinks x, y, and z are caused by a, b, and c. And this one thinks a, b, c, x, y, and z are not that big of a deal and mostly in your head and they happen to work for the Social Security Administration. I am reading a book about MS right now, mainly because it is the newest one I could find and it has Tysabri in it. I like to know the ins and outs of how things work (or the best they can theorize about how they work) and I also like the technical breakdown of MS and how it effects the person with it. Maybe because I am a pedantic, detail orientated kind of girl who always liked science best in school. Or maybe because I am waiting for my books that I requested at the library to come in, who know? I just know that it is always interesting to me to read the different theories about MS. I'm tired of the same old books that only reiterate, "MS is a autoimmune disease that attacks the myelin sheath... " I want to know what the latest is on it all. I am not holding out for a cure in my lifetime; I seriously doubt it will happen that soon. But I want to know things that nobody wants to tell me, like my prognosis, the odds of such-and-such happening, what I can expect to the best of the knowledge that is out there. I know there are no guarantees, but I also know that certain things will shed some light on what is most likely to happen to me. Two of the biggest conflicting things I have found so far -- and I am not that far into the book -- are the causes of the extreme fatigue that is so common in MSers and whether or not smoking is detrimental to MS.

The Fatigue Thing
One neurologist told me that my overwhelming lassitude was due to the destruction of signals along the nerve pathways. I turned that one over and over again and didn't see how that would make me so darn tired. But I also assumed that he knows much more than me about this disease, so I figured he had to be right. Another neurologist told me that they couldn't narrow it down to just one thing and that it remains largely a mystery. The book I am currently reading (and a lot of the books that I have read about MS are rather vague about the cause of fatigue, only talking about the very real problem of the kind of fatigue that MS brings) says that the fatigue is most likely caused by a combination of depression, the added work it takes to move about, which I find so true, my right leg is a drag (HA! It drags and its a drag to have it. I kill myself!) and the medications commonly taken for MS. What I want to know is if the mice (or rats) that they create the MS model in suffer from this overwhelming fatigue too. Do they take long naps, look at the wheel in their cage and think, "I need the exercise but if I do my vision will be messed up and there is a high probability of my falling and hurting myself," do they reconsider having a litter of babies because they are worried that they won't be able to keep up with them and give them the kind of life they want them to have? Enquiring minds want to know.

The Smoking Thing.
In the book I am reading they say that smoking will not alter the course of MS, nor will hard drugs or alcohol. Of course they do not think you should do any of those, but they feel drugs, cigarettes and alcohol have the same effect on MSers as the general population. There was one small study done awhile ago, somewhere in Europe, that made those conducting the study think that smoking could worsen one's MS. A larger scale study was done with different results. My mind is hazy on the details, so please forgive, more informed readers, for not remembering all the minute details right now. From what I can gather, smoking will not worsen your MS, which is great news for those of us struggling to ditch a (delicious, addictive, enjoyable) habit that is not good for the rest of your body even if it does not worsen your MS. I will miss my smoky treats but I am working on quitting anyway, for the good of the rest of me.

This concludes my report of conflicting reports. If nothing else it makes one feel like part of an elite club that science is having a hard time unraveling the how's, what's and why's of. Not that I am thrilled to be a part of said elite club, but if I have to belong to any group I would rather it be one that is complicated and confusing for even the most educated individuals out there. Nothing like confounding science to make one truly feel like an individual.


Jen said...

I think we're crossing paths (unbeknownst) on your blog, Blindbeard. Just read your last post and, lo and behold!--- a new post just popped up.

I'm grappling with the "litter of babies" issue at present time. I'm 37, we would like to have just one child, and we keep wrestling with the issue. When I have a relapse, I don't even want to think about it. So what do we do? The issue has been on pause now for about 3 years. We'd like to adopt an older child, but we just can't seem to figure out if I can physically handle it.

As for drinking/smoking and MS, my personal motto is "keep the meds low, so the liquor can flow." Because it'll be a sad day in Jersey when an Irish girl can't drink!

Denver Refashionista said...

I am glad you are doing the reading and the sharing. I too wonder about my long term prognosis. Right now I feel good most of the time but I do have short spells of vertigo and fatigue. I am not on meds so that cannot account for the fatigue but I do tire very easily these days.

I don't smoke cigarettes and I don't really drink because it seems to make me feel yucky but that may not be an MS thing at all.

I do have a prescription for medical marijuana but I do not write about it on my blog because I'm a school teacher and my blog is public.

Please continue to share anything you learn about long-term prognosis. I can walk and excercise now and I would like to continue in this vein and am curious about my chances.

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