Okay, so I wasn't feeling well after all the tests on the 18th. It's the first time I've had a reaction to the flaire dye from the MRI. But then after I got home, I was feeling really bad in the stomache. I got nausias and diariahe.
I also noticed a bad reaction to the ECG stickers. They were really itchy towards the end there, and I noticed once I got them off that I was scaring. Even after I've showered, they're still a bit itchy, and it's hard to ignore. But they're getting better now. But there are a few that are raw and scared. Chris has washed them with alcohol, but... anyway, I've started putting Neosporine on them, hopefully it's not too late.
I noticed that my throat was itchy. It was hard to not caugh while I was laying down for the MRI. If I remember right, I caughed a bit with the asthma medication on the 16th. The caughing got worse, and my throat is really raw now.
I wasn't able to go in to work on Friday because it hurt so much. I was dizzy with vertigo, and had a headache. It wasn't good. I spent the day sleeping myself well while trying not to move too much.
I still have the coughing and the vertigo. But Chris got me some caugh supressant and it seems to be slowing them down. Hopefully I'll be ready for work tomorrow.
The thing is I'm not sure what the coughing/itching is from. I have a few theories. 1) A number of people at work, especially the ones I work closesly with, have been sick the last couple of weeks; so maybe I got it from them. 2) The asthma medication. 3) Just another bad reaction from the MRI Flair injection. 4) I have a weakened immune system due to all the running around poking & proding my body for all the tests.
Sunday, September 21, 2008
Thursday, September 18, 2008
More Doctors
Today was another long day. It started at 8:30am with meetings with my physciatrist and psycologist. That took a total of 1.5 hours.
Following that I had to redue my labs. Ugh! They hadn't pulled all the viles out, so the didn't have enough blood for the tests. Yup, they had to do it twice.
After that I had an MRI at 12:30 pm. I was told I could get a topical numbing gel put on my arm for where they were going to have to do the injection, as well as getting an anti-anxiety pill. They didn't give me either though, because I was told to arrive 30 minutes before, and when I got there they told me, it had to be an hour before. Grrr!!! So mad was I! They did put a towel over my eyes so I couldn't watch. Anyway, so I had to have the regular MRI, and then one with flair (the dye injection).
After that I had to have a chest x-ray. They also made me breathe normal, hold my breathe, and do deep breathes. It was all in the same place.
Then I was swept over to the neurology place to do an ECG Test. For this one they just did a blood pressure test and then hooked me up to a heart monotor for 24 hours. I was able to go home with a traveling monotor. I had a whole bunch of stickers all over my body. Ugh, but at least I could take it home with me.
Following that I had to redue my labs. Ugh! They hadn't pulled all the viles out, so the didn't have enough blood for the tests. Yup, they had to do it twice.
After that I had an MRI at 12:30 pm. I was told I could get a topical numbing gel put on my arm for where they were going to have to do the injection, as well as getting an anti-anxiety pill. They didn't give me either though, because I was told to arrive 30 minutes before, and when I got there they told me, it had to be an hour before. Grrr!!! So mad was I! They did put a towel over my eyes so I couldn't watch. Anyway, so I had to have the regular MRI, and then one with flair (the dye injection).
After that I had to have a chest x-ray. They also made me breathe normal, hold my breathe, and do deep breathes. It was all in the same place.
Then I was swept over to the neurology place to do an ECG Test. For this one they just did a blood pressure test and then hooked me up to a heart monotor for 24 hours. I was able to go home with a traveling monotor. I had a whole bunch of stickers all over my body. Ugh, but at least I could take it home with me.
Tuesday, September 16, 2008
Testing for the Test
Whew! Today was a busy busy day! I took the day off of work because I had five different tests today for the FTY720 trials.
At 7:30am I had a Pulmonary Function Test. This is where they test my lung capacity. I had to breathe into a tube a number of times. One of the tests was just me breathing regularly, then taking a deep breath in and blowing it all out. Another test was breathing in against something blocking the airway. The next was breathing out against something blocking the airway.
Each of the tests I had to do three times. Then I had to take an asthma medication and wait a little bit. Then I had to repeat and do all the tests again... three times. You'll see that that's a pretty regular thing: 3 times repeate of tests.
The next test was getting my labs done right afterwards (about 9:00am). They had to draw three viles worth of blood for all sorts of tests I'm not aware of. I also had to do a urine test for pregnancy assurance.
The test after that was MS Functional Composite Test, at 10:00am. This test was actually another series of tests. They had me walk as fast, and as safely, as I could down a straight path... x3. The next test we did was seeing how fast I could put pegs into a board, one by one. This one we did six times because we did it with each hand three times. The next test was reading letters off the wall. The bottommost line I could read. The letters were all the same sizes, they just faded as they went down the wall. I think I did pretty good at that. Again, x3. They had to take my blood pressure (which sucked because it was on the arm that the blood was taken from)... four times, because one of the times didn't take. Oh, and the hardest test we did was this numbers test. They played a CD that would give numbers and I'd have to add them up, then it'd give me another number, and I'd have to add it to the last number (not the answer to the last set). It's a lot tougher than it sounds because it's start spilling out numbers quickly. Again, x3.
At 1:15pm I had an EDSS Test. This is your basic MS test that the neurologist does. It was done by a different doctor from my normal neurologist. This was where he made me walk a straight line, one foot in front of the other. Then he checks my reflects. Then the doc did the poke test, to see if I could tell the difference between soft and sharp. He also did the "ping" test. That's what I call it, at least. It's where he takes a tuning fork, srikes it ("ping!"), and then places it against parts of my body to see if I can feel the vibrations. I was fine, except my left foot, it took quite a strong "ping" for me to feel it.
Then I had to do it all over again with Dr. Webb. Which wasn't bad, it just meant that I had to repeate it only twice. Not bad.
It was a long day of testing. But it was over by two pm, which was nice.
At 7:30am I had a Pulmonary Function Test. This is where they test my lung capacity. I had to breathe into a tube a number of times. One of the tests was just me breathing regularly, then taking a deep breath in and blowing it all out. Another test was breathing in against something blocking the airway. The next was breathing out against something blocking the airway.
Each of the tests I had to do three times. Then I had to take an asthma medication and wait a little bit. Then I had to repeat and do all the tests again... three times. You'll see that that's a pretty regular thing: 3 times repeate of tests.
The next test was getting my labs done right afterwards (about 9:00am). They had to draw three viles worth of blood for all sorts of tests I'm not aware of. I also had to do a urine test for pregnancy assurance.
The test after that was MS Functional Composite Test, at 10:00am. This test was actually another series of tests. They had me walk as fast, and as safely, as I could down a straight path... x3. The next test we did was seeing how fast I could put pegs into a board, one by one. This one we did six times because we did it with each hand three times. The next test was reading letters off the wall. The bottommost line I could read. The letters were all the same sizes, they just faded as they went down the wall. I think I did pretty good at that. Again, x3. They had to take my blood pressure (which sucked because it was on the arm that the blood was taken from)... four times, because one of the times didn't take. Oh, and the hardest test we did was this numbers test. They played a CD that would give numbers and I'd have to add them up, then it'd give me another number, and I'd have to add it to the last number (not the answer to the last set). It's a lot tougher than it sounds because it's start spilling out numbers quickly. Again, x3.
At 1:15pm I had an EDSS Test. This is your basic MS test that the neurologist does. It was done by a different doctor from my normal neurologist. This was where he made me walk a straight line, one foot in front of the other. Then he checks my reflects. Then the doc did the poke test, to see if I could tell the difference between soft and sharp. He also did the "ping" test. That's what I call it, at least. It's where he takes a tuning fork, srikes it ("ping!"), and then places it against parts of my body to see if I can feel the vibrations. I was fine, except my left foot, it took quite a strong "ping" for me to feel it.
Then I had to do it all over again with Dr. Webb. Which wasn't bad, it just meant that I had to repeate it only twice. Not bad.
It was a long day of testing. But it was over by two pm, which was nice.
Tuesday, September 09, 2008
FTY720 Visit 1
Okay, so I'm getting ready to start the drug tests for an oral MS drug. On Sept. 9th I met with Nancy the Neurologist and went over the paperwork. It doesn't seem like that big of a deal, but it took a lot longer than I thought it would. It turns out Fingolimod (FTY720) has a few side effects that made me a bit worried.
The biggest thing about Fingolimod is that it moves the white blood cells, which causes the immune system to be weakened. It's bad enough that MS causes the innune system to be weakened, now I'll be taking something that causes it to be even worse. Grr. Oh well, I'll just have to up the vitamin dosages and such... and take extra shots, for flu and such.
The other thing that really really worries me is the birth defects as a possibility. That really scares me and makes me worry about the future. Is it worth it, I think? I keep thinking that maybe I should wait and go ahead with hmy life. But I still go on with heading towards the trials, thinking of I'm not supposed to do it, one of the tests will turn out negative, and I'll have to drop out. It's hard to not think about. There's only been two recorded cases of birth defects, and they might have not properly gone off the medication before getting pregnant. But it still worries me.
The biggest thing about Fingolimod is that it moves the white blood cells, which causes the immune system to be weakened. It's bad enough that MS causes the innune system to be weakened, now I'll be taking something that causes it to be even worse. Grr. Oh well, I'll just have to up the vitamin dosages and such... and take extra shots, for flu and such.
The other thing that really really worries me is the birth defects as a possibility. That really scares me and makes me worry about the future. Is it worth it, I think? I keep thinking that maybe I should wait and go ahead with hmy life. But I still go on with heading towards the trials, thinking of I'm not supposed to do it, one of the tests will turn out negative, and I'll have to drop out. It's hard to not think about. There's only been two recorded cases of birth defects, and they might have not properly gone off the medication before getting pregnant. But it still worries me.
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