Monday, May 04, 2009

Staying on Top of My MS Game

What's the difference between MS nerve damage and MS symptoms? I think it a question of permanence. Symptoms are temporary and nerve damage is...well, least until they figure out how to reverse it. The visual impairment (aka, optic nerve damage) appears to be ongoing (aka, permanent). The numb feet symptom...ALL GONE! Can I get a WHOO-WHOO?!


I think that this mini episode taught me that I have to stay on top of my MS game. You know...keep up with the self care and reduce the stress. I can't NOT have my boyfriend break up with me or NOT have my dad die (well, I guess that won't happen again, will it?), but I CAN keep up with the things that make me feel better: good sleep hygiene, Rebif three times per week, monthly steroid infusions, yoga, walking, meditating, etc.

I'm getting a full MRI series (brain, cervical spine, and thoracic spine with and without contrast) on Wednesday. I'm prepared for the boredom, claustrophobia, and inability to fall asleep this time (my eyeballs move when I sleep which makes it hard to get a good look at my optic nerves), so I'm bringing my iPod with a bunch of public radio podcasts. I know I'm such a geek, but it will keep my awake and oblivious of the fact that I'm stuffed in a tube for 3 hours.

I have an appointment to discuss the MRI results with the neurologist next week. The MRI is supposed to tell her and me how the MS is progressing. From what I gather, if there are many more lesions or if the lesions that were there are bigger or more active or whatever, she may consider changing my course of treatment. If, however (and this is the option I'm rooting for) the disease has not progressed significantly, then I will stay on the Rebif and monthly steroid infusions and hope for the best until some of these studies pan out and all the very talented scientists on the case find a cure, reverse the damage, or come up with effective oral meds.

This UK Telegraph article reports on a limited study that showed how adult stem cells reversed symptoms but not nerve damage.

This MedPageToday article has really great things to report about the efficacy of oral MS meds. And another, in Health News, singing the praises of a combination of two oral drugs.

This PeerView Media Bar story suggests adding a steroid injectable interferon beta drugs, slows down the progression. Based on my lay person's sensibilities, it seems like this goes along with the neurologists ideas of giving me Rebif AND the infusions of solumedrol (another steroid).

This EMax Health article summarizes research that was presented at the American Academy of Neurology about finding a thingamajig called glutamate that gives info about the progression of the disease and, therefore, may be a key to better treatment.

This Medical News Today piece
describes the discovery of a protein that apparently eats both myelin and gray matter. I'm quite sure I am not getting that right since I'd rather not think about anything devouring my gray matter, but read it yourself. Perhaps you have enough gray matter left to understand it better than I did.

In the meantime, though, I'm going for the gold.

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