November 27, 2007

Brief entry

Hi all,

I'm sorry for not writing for several days. Last week was Thanksgiving. It was also the 44th anniversary of President John Fitzgerald Kennedy's assassination. I noted that but few others did, I'll bet. Was anything on TV about it? Probably have to wait till 2012 and the 50th anniversary for much to be made of Nov. 22 anymore. Sept 11 has pretty much superceded it as America's most terrible moment, and rightly so for this generation. But for those of us born in the 50s or before, Nov 22, 1963 was a horrible and life-changing day, no matter which side you were on of the political fence. I think even Republicans who hated JFK were shaken, stunned, and changed by an event not the most vitriolic Kennedy basher could have wished for. I know I was, and I adored him.

On a somewhat, though only barely, lighter note, since I do not want to go deeper into an always dangerous subject for me, I went to the ophthalmologist on Friday. It was for my regular yearly eye exam, yes, but I'd made the appointment at this time because I've been bothered by an ongoing problem I'd simply gotten fed up with: the tendency of my vision to go double or even quadruple whenever I get tired, when my eyes get tired, that is. Even as I am typing this, at 11:30 pm, after a full day of using my eyes and the last few hours in front of a computer screen, I am having trouble seeing what I write. There are multiple images before me; the letters all run into each other so that, reading, I cannot be quite sure which line I am actually on nor which word is the one that I should follow.

There now, I just put a business card in front of one eye and anchored it with my glasses. So now I can see, using one eye instead of two, though I have no distance vision. But when Dr E, who had pooh poohed the problem at first, or at least had not wanted to deal with it, dunno why! heard that fatigue made it worse, even caused it, he suddenly seemed concerned, and told me to see my internist. He said that it was a symptom of myasthenia gravis and that I should be checked out for it. Well, myasthenia gravis! It's an autoimmune neuromuscular disease, much better characterized than ALS, and less often fatal, but wouldn't it be the strangest thing if I myself came down with a disease in the same family as the one that is taking Joe?! You'd really have to ask what we'd both been exposed to, no?

Iin any event, I saw the internist today, and as usual, he didn't talk to me (he has a reputation as a very personable and concerned and compassionate physician who spends a lot of time with his patients, but I have never seen any of it.,..). No, he simply looked at his computer, wrote out a referral to a neurologist, ordered bloodwork, and got away as quickly as possible, not a word to me about myasthenia, no questions, no comments, no tests, no exam, nothing...Not even a history to determine if it could be something else instead! I'm sorry but I think I might have a right to feel paranoid about this. He ALWAYS acts this way with me, yet when Joe had a first appointment with this same doc, he spent a full hour with him. My first appointment was five minutes. I suspect there is a conspiracy of local doctors against seeing me, and I think it has to do with a single one who hated me because his nurse decided I was faking narcolepsy and seeking he blacklisted me!

Well, so my very compassionate doctor did nothing to allay my fears or even discuss alternative diagnoses, only referred me on, and let me swing in the wind for however long it may take to get an appointment with the neurologist. That could be 2-4 months, who knows? Dr O might be able to get me in sooner, with that doc or with one at her hospital, but I am not sure. So it could be months before I even begin to have an answer, and if it isn't MG, then what the hell is it? I need to know, because I would like to find a way to cure it, which is why I went to Dr E in the first place.

I said a "brief entry, so I'm stopping here, as it is midnight and I have to get up early in the morning. Gotta take my Xyrem too, and that will put me to sleep in a half hour...TTFN and more soon.

Posted by pamwagg at November 27, 2007 11:20 PM | TrackBack


I remember Pres. Kennedy's assasination very well. I was 10 years old...and it was my dads birthday. Even as a Canadian it was a horrible day. Our grade 5 class watched the funeral on tv...and we were all sent home from school the day it happened. President Kennedy had the respect of people of all nations, not just his own.

I so wish there was someone even close to his calibre in the whitehouse today.


Posted by: Casey at November 30, 2007 03:52 PM

Myasthenia gravis! Pam, it would be good if Dr. O could get you into a neurologist quicker than two months from now. Could it be the meds causing these symptoms? Take care of yourself.

Posted by: Debbie at November 29, 2007 11:29 AM

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