Jan. 1st, 2011

The worst of 2010: Bob was diagnosed with Relapsing Remitting Multiple Sclerosis

It is sometimes what people don't post about. I've not really put much about this out there, as it has been a constant, nebulous thing that has taken up a lot of the past year to get an official diagnosis. I'm not trying to sugar coat things, but it could be a lot worse.

Now, I still don't know a ton about MS. It is an odd disease. Everyone seems to describe it differently. Readers Digest: the body's immune system attacks the coating of the wiring in the brain, and the symptoms can range wildly from this. Imagine the wiring on a car having the coating chewed off. It depends on what the wiring goes to. I'm finding that writing this post helps me get it straight in my head what he has and what he is going through.

Bob has relapsing-remitting, the most common type, described on wikipedia as follows:

The relapsing-remitting subtype is characterized by unpredictable relapses followed by periods of months to years of relative quiet (remission) with no new signs of disease activity. Deficits suffered during attacks may either resolve or leave sequelae, the latter being more common as a function of time. This describes the initial course of 80% of individuals with MS. When deficits always resolve between attacks, this is sometimes referred to as benign MS, although patients will still accrue some degree of disability in the long term. The relapsing-remitting subtype usually begins with a clinically isolated syndrome (CIS). In CIS, a patient has an attack suggestive of demyelination, but does not fulfill the criteria for multiple sclerosis. However only 30 to 70% of persons experiencing CIS later develop MS.

Earlier in the year Bob lost vision in one eye and went to the optometrist, who sent him to a neural Ophthalmologist, who suspected MS, and sent him in for the relevant tests/MRI's, etc. Most of the tests were inconclusive at first, more showing that he didn't not have MS more than he officially did. It was hard to tell people what he was going through, as no one would definitively say. He finally got an official diagnoses of "Probable MS".

The attack did leave sequelae (scars on the nerve wiring), meaning his vision is still impaired but healing. Being that his MS seems to favor the optic nerves, and Bob doesn't want to go blind, he decided to start an MS inhibiting medication, a daily shot of Copaxone. He got a note from his doctor saying that he can't work more than 10 hours a day (when he is at a client site, then might run meetings all day, even into dinner meetings) and is supposed to break frequently to rest. He gets an hour and a half uninterrupted at lunch time so he can nap. IBM is very supportive about work provisions.

Bob seems to be doing OK, gets really tired, but is optimistic about the future. Anything that he might get diagnosed with at this point could actually just be a symptom of the MS. Restless leg syndrome for him isn't RLS, it's just the MS. He will turn to me and say that he doesn't know if his arm is hurting because he did something to it, or because his brain is telling his arm it hurts.

Anyway, it's been a crazy year. That's just one thing. Hopefully 2011 will be a bit more stable.



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