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I have complained to some of you about problems I’ve been having with my left hand. About mid-way through my pregnancy, I found that typing at work became difficult. My left hand seemed weaker and I could no longer fully straighten my left index finger. When I asked my OB about it, they simply said that pregnancy could cause strange side-effects, so I ignored it until I was two weeks post partum. At that point, I went to see my primary care doctor who sent me to a hand specialist who in turn sent me to a neurologist. This process took about two months, which meant my hand had been giving me trouble for about seven months by that time.
The neurologist ordered a neck MRI, performed an EMG which is used to record the electrical activity of muscles, and did a needle examination to test the muscle to see if there had been any damage to it as a result of the nerve problem. The neck MRI came back normal, but he did find abnormal muscle electrical activity. His original thought was that I had a pinched cluster of nerves and gave me some exercises to try and resolve the problem. Unfortunately, my hand actually seemed to get worse and I saw extreme atrophy of my hand muscles. When I went back for a follow-up, he told me he thought I might have ALS (more commonly known as Lou Gehrig disease) and wanted me to get a second opinion.
I didn’t go see his recommended doctor since a family friend was able to get me in to see an Emory doctor who specializes in ALS. Jin and I went to Emory last week where they repeated the same tests but did a more in-depth study. We were honestly expecting the Emory doctor to tell us my original neurologist was wrong, but the Emory doctor actually thinks I have ALS as well. They have not said I definitely have it, but they are worried enough that they gave me some very scary literature and want me to go on a drug that slows the progression of the disease. There is no known cause or cure. There is a form which is not genetic and seems random in who it targets. I’m very young for this disease (the average age is 40-60), but I’ve been told it has happened to people younger than me as well.
The prognosis is absolutely horrifying to me. ALS causes progressive muscle weakness and wasting to the point where many become a virtual quadriplegic. Your mind is not affected, but your body simply refuses to function. Average life expectancy after diagnosis is 2-7 years. There is the rare case where a reversal or halting of symptoms is seen, but this is not common.
Jin and I obviously had a very hard week, but I think we’re doing better simply because we’re both in a state of hopeful denial. I really just can’t fathom that the doctors might be right. We’re waiting to see what comes out of the next tests scheduled for mid-October (spinal tap) and are doing a bit of self-diagnosis hoping to come up with something that has a better prognosis… If you guys have heard of anything, please pass it along.
In the meantime, we’re taking preventative measures by starting on the recommended drug. That has to wait, though, until I wean Luke. That’s the saddest part for me right now since we worked so hard to get nursing established and it has just become easy in the last month or so. I know Luke will be fine with formula, but it still makes me cry. It’s also forcing me to at least partially accept that the doctors might be right; otherwise, I would not take the drug. If I do have ALS, though, it’s best to start taking it as soon as possible, so I’m using this week to switch Luke to the bottle.
I wanted to let you guys know what was going on since this is obviously a huge thing Jin and I are dealing with, but I don’t really want to talk about it until we have something new to report. I’m trying not to think about it too much and every time I rehash the details, I get upset all over again. We’re just trying to focus on the positives and enjoy today. I’ll send an update when we know more. I’d still love to hear from you, I just won’t want to talk about all the doom and gloom.
If you did not get this e-mail directly from me and would like updates, let me know.