Mass General Hospital was somewhat disappointing yesterday, but it's a new direction as opposed to the same old same old, so we'll see what happens there.
I saw 2 neurologists......both of whom are supposedly 'The Best'.... and they are not convinced I even have MS based on my records. Of course, I don't have the 1992 MRI or spinal tap records........I can't get those even if I wanted to.....and I didn't have the 2004 MRI cd in the 5 pounds of medical charts I handed them. They want to do the spinal tap and MRI again, but can't do the MRI until the rod is out. I'm scrambling today to find old records.
They gave me Nortriptylene for the headache with the disclaimer that "if you don't feel better in one month
, take 2 a day." Hmmm. I'm not sleeping, I'm not eating, I'm throwing up and feel nauseous all day and night, and now I have to wait a month to see if this medication will even work? Grrrr. I took one last night.....no change. My head is banging and I just want to sleep (as if I could).
I have to keep a headache diary: when I get one, what triggers it, etc. Well, it's a constant. How do I log that in? The doc asked where the headache 'is'. I told him it's like having a hangover every minute of every day and night. He's never had a hangover. I asked him what was wrong with HIM.
I can't describe it in other words, how could ya? It's not on the left side or right side, it's all over.
I have a sleep study next Saturday, where I go to the Holiday Inn next to the hospital and sleep while they monitor stuff. They seem to think I have sleep apnea. I don't snore, but that's of no consequence. I just don't sleep anymore. Last night I saw the clock each hour after midnight. The copay for the sleep test is $500. Joy.
I need to see an opthamologist for my right eye, which is dilated and fixed most days, but not on others. I've had that for a few years, and I don't even think about it unless I'm in bright sun. Yay, RayBans.
I don't have an appointment with a gastroenterologist until Feb. 22. I've thrown up 5 days out of the last 10, so I don't know how much longer I can go being sick all day and night. I'm on the cancellation list, and may have to drop everything and go, if
I can get there in time. After a 3 hour trip to get there, we spent about 5 hours in the hospital and then another 2 1/2 hours home (no traffic in the afternoon). There are $10 in tolls, $8 parking and 3/4 tank of gas each trip. Can you say 'broke'?
I have the rod scheduled to come out March 18, but I feel like moving that date up, but Jeez.....I'm not keen to add another malady to the list.
That's all for now. I think that's enough, don't you? Celebrate Your Good Health Today!