Sunday, July 31, 2016

World MS Trend Day 2016

Today is ‪#‎WorldMSTrendDay2016‬. You may notice a flood of social media posts with ‪#‎curems‬ or ‪#‎MultipleSclerosis‬.

I have MS, unfortunately (I think I got it because I had a particularly beastly mononucleosis infection as a teenager; there may be a connection).

So I’ll do my part today to spread awareness of what MS is and what it does, and why we aren't getting a cure (hint: money). And then? I will try not to think about MS--because doing so, I find, is a downer.

What is MS? Multiple sclerosis (MS) is a real disease, and a real and increasing problem. Its name refers to numerous scars on the brain that occur when myelin, which is the outside coating of the pathways between neurons in the brain, is eaten away by an overzealous immune system. Scars, or lesions, of worn-away myelin can result in spasms, pain, trouble walking, speaking, seeing, swallowing, using one’s hands, etc. MS usually flares when lesions are new and active, and subsides as other lesions heal.

MS is a neurological illness—and neurological illnesses are particularly frustrating because they can make us feel pathetic, helpless. After all, our brains control us, so we are SOL when our brains betray us, as we realize when MS, or ALS, or Parkinson’s, or any other neurological disease strikes.

Alarmingly, MS is increasing: stats have jumped from 400,000 people worldwide with MS in the 1990s to nearly 4 million now. Most MS patients are from England, Ireland, Scotland, Canada, and the northern USA, but more people from all regions are getting MS now. No one knows why.

No cures or even good medicines exist for MS. New meds have been released in recent years, making it seem as if progress in treatment is being made. In reality, however, these meds are almost all old, re-purposed drugs with their price tags jacked up 5,000% to take advantage of the desperate MS market, or else these meds are interesting new poisons—very expensive poisons: $65,000 a year for near-constant fatigue, nausea, etc.

Maybe that's the point of these MS awareness and calls for a cure days: we need to be aware that Big Pharma rips off niche markets like MS patients…and Parkinson’s patients…and cancer patients…and diabetes patients. If you can fight the power, please try to do so.

We also need to be sure that, in our upcoming elections, we vote in ways that will protect health insurance coverage for people with chronic illnesses. Thank God for the ‪#‎ACA‬ (Obamacare); it is the reason why I have health insurance that pays for my MS treatments. Seriously!

Although all chronic illnesses deserve our attention and awareness, MS can be an especially difficult disease because it’s usually not obvious to outsiders, except for vague symptoms that may appear to be other problems. Example: I’ve been bumping into some walls lately, as I walk around corners, because my proprioception is off: my brain isn't correctly perceiving distances between my body and nearby obstacles. I’ve also been occasionally tripping and falling for no reason whatsoever. And lately, I have had a few speaking issues that really embarrass me, and, I fear, make me look stupid, which I am not. All of this is MS--not drunkenness (I don't drink) or slow-wittedness.

The good news is that all MS symptoms are usually temporary or fleeting. So, for me, a few days a year, MS is horrible; many days, I can actually believe I don't have it at all; and the rest of the time, MS is just slightly annoying background chatter, invisible to anyone but me.

I’m doing pretty well, all things considered, and in comparison to many others, so I should feel grateful. "You look so good!" is what neurologists tell me.

Nevertheless, I am just about to start a new MS drug. I wish I could say that I am hopeful that the medicine will make me “better,” but in fact, I am worried that it will make me feel worse. Still, I have to try it, just to say that I did, so I can show that I've tried the protocol treatments and so that I can be eligible, later, for the new chemo-type drugs, immune system-blasters, or stem cell treatments that are risky but that may actually be cures. (I'd like a serious treatment that will stop the threat of progression, which always looms, like an ominous shadow.)

So there it is. Only a few days a year are MS awareness days, but people every day are coping with MS.

If you’ve read this, now you might know a little more about MS—for whatever that’s worth. Don’t worry that MS will come after you next, but do consider, perhaps, how precious your brain is. Protect it. Cherish it.

Also, if you're an American, be sure to cherish and protect health care coverage for yourself and for your fellow citizens.

Keep healthy and be well,

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