Monday, January 21, 2008
What I've figured out, what I'm up to (besides being 5 ft. 6)
Did research on the findings in the Mayo records I have so far. I'm supposed to get copies of the consultation notes and the pulmonary tests done in January, but they haven't arrived yet. I figured I should look up even the minor abnormalities so that in the off chance something progresses, I won't be totally in the dark.
Sinus bradycardia: a sinus rhythm with a resting heart rate of 60 or less. Mine was 47. This can be normal as athletes generally have very low resting heart rates. However, since I'm not an athlete, there is a slight possibility this might be caused by disease, like my hypothyroidism.
The plaques in my brain could be a few different things. The migraines would be the least health-threatening cause. I did some checking around on some message boards, though, and did come across other people with Sjogren's who had similar plaques but not necessarily migraines. So autoimmune disease could be a factor, the worst case scenario maybe being vasculitis (but that's pretty rare)? Most of the info I found on search engines described cardiac disease or Alzheimer's as a cause, but right now I think the chances of that would be pretty remote. Migraines, possibly caused by Sjogren's, would be the most likely explanation in my case.
Postganglionic sympathetic sudomotor impairment, reduced distal leg QSART response: these came up during my autonomic reflex screen, where they look for neuropathy. These show the very beginnings of abnormal sweating ability, which sounds like it should be no big deal, but it's actually an indicator that one's body is having trouble with functions that are supposed to happen automatically. And it's in the area where I'm experiencing the most problem with periodic numbness, so it fits.
Increased elctromyographic needle insertional activity: this was in the same part of the leg where I had the abnormal sweating ability. This might be due to an increased incidence of muscle cramping in that area, not suprising considering these muscles do twitch continually in my sleep, but I thought it was interesting. Something to keep an eye on perhaps to see if it changes over time.
Aortic valve sclerosis: this is calcification in the heart. It is common in people over 65, but not so common in someone younger. It can have an autoimmune cause. There is a 50 percent higher chance of developing significant heart disease where the sclerosis develops into stenosis. The best prevention is maintaining normal blood pressure and normal cholesterol, which I am already doing.
Aortic, mitral, tricuspid valve regurgitation: abnormal leaking of blood through these valves in the heart. Can be caused by autoimmune disease, although that's pretty rare. If it is severe, it can lead to congestive heart failure, but mine is minor, so I will probably be fine.
Side note: noticed that my BMI (body mass index) listed on one of the tests is down to 22.9. This means I am now NORMAL! Yayyyyy! It was only a few years ago I was in the obese category. What a difference 65 pounds makes.
Started the asthma medications the week after I got back from Mayo. The albuterol is great stuff in that it gets rid of that sensation of an elephant sitting on my chest, it works within minutes, and it keeps me from hacking up a lung every time I'm near a cigarette or out in the cold. But it's considered a "rescue" medication, so the only time I'll take it regularly is prior to exercise.
The Advair? Too soon to tell. It makes me cough more, and it increases the tremor in my right hand, to the point where I knocked a full glass of ice water on myself when I was out to lunch with the aquacise ladies. Maybe the side effects will subside over time.
Started the Imuran last week. Potential for side effects is quite high, but as Ducky likes to say, sofa so gouda (so far, so good)! I'm only on a half-dose at the moment and will go up to a full one next week.
But I honestly can't tell yet if the Imuran is actually doing me any GOOD. It hasn't affected the fatigue, at least not enough to keep me from needing 10-12 hours of sleep or to keep me from the ever-popular zonking out on the couch. Maybe it takes a long time to become effective?
Went to an Italian restaurant last night to celebrate my sister-in-law's birthday. It was tricky, but I did manage to figure out something they could make that was safe for me to eat, and I was pleased that they were willing to go off their regular menu for me. I had a small steak and grilled carrots without their usual seasoning, a small salad and a scoop of plain vanilla ice cream for dessert.
Here is an example of why it's a good thing I never had kids. My almost 4 year old niece is helping her mom open presents, and she is asked what's in the gift bag, and she yells out, "DOODY!" My sister-in-law looked absolutely mortified, but I was howling with laughter and couldn't stop!
For the time being, I am done looking things up, but unfortunately, this doesn't mean I'm done doing the doctor thing. Tomorrow, I am going to the primary care physician to set up periodic bloodwork to monitor the effects of the Imuran. I also need to get in to see an opthalmologist because I'm having problems with blurry vision and should make sure it's just normal aging and not something else.
Future plans? Well, as far as writing goes, I have lots of plans for articles for But You Don't Look Sick. I want to do one on preparing for a Mayo Clinic visit, I have a couple of books to review, and there are several products I'd like to review.
I also have an iTunes gift card to spend. I've already made a long list of songs I want, so all I've gotta do is download them. Plus, I'm not quite finished tranferring over songs from my CDs, so I'll resume that soon.
Have not heard a peep from my long-term disability insurance company, and they're wayyyy over their self-imposed 45 day limit for replying to my appeal of their benefit denial. But I'm not gonna do anything until after I've got all my notes from Mayo handy. I'm about 99 percent sure I'm getting a second denial anyway, and I want my second appeal to have some new data.
And at some point, I need to tidy up the command center before I start getting into tax return mode. It always looks like a tornado hit by the time I finish filing. My big dilemma this year will be finding out whether my disability pension is taxable.
My freezing fingers are screaming for me to quit. As they say in the movie "Clueless", I'm outtie.
Sinus bradycardia: a sinus rhythm with a resting heart rate of 60 or less. Mine was 47. This can be normal as athletes generally have very low resting heart rates. However, since I'm not an athlete, there is a slight possibility this might be caused by disease, like my hypothyroidism.
The plaques in my brain could be a few different things. The migraines would be the least health-threatening cause. I did some checking around on some message boards, though, and did come across other people with Sjogren's who had similar plaques but not necessarily migraines. So autoimmune disease could be a factor, the worst case scenario maybe being vasculitis (but that's pretty rare)? Most of the info I found on search engines described cardiac disease or Alzheimer's as a cause, but right now I think the chances of that would be pretty remote. Migraines, possibly caused by Sjogren's, would be the most likely explanation in my case.
Postganglionic sympathetic sudomotor impairment, reduced distal leg QSART response: these came up during my autonomic reflex screen, where they look for neuropathy. These show the very beginnings of abnormal sweating ability, which sounds like it should be no big deal, but it's actually an indicator that one's body is having trouble with functions that are supposed to happen automatically. And it's in the area where I'm experiencing the most problem with periodic numbness, so it fits.
Increased elctromyographic needle insertional activity: this was in the same part of the leg where I had the abnormal sweating ability. This might be due to an increased incidence of muscle cramping in that area, not suprising considering these muscles do twitch continually in my sleep, but I thought it was interesting. Something to keep an eye on perhaps to see if it changes over time.
Aortic valve sclerosis: this is calcification in the heart. It is common in people over 65, but not so common in someone younger. It can have an autoimmune cause. There is a 50 percent higher chance of developing significant heart disease where the sclerosis develops into stenosis. The best prevention is maintaining normal blood pressure and normal cholesterol, which I am already doing.
Aortic, mitral, tricuspid valve regurgitation: abnormal leaking of blood through these valves in the heart. Can be caused by autoimmune disease, although that's pretty rare. If it is severe, it can lead to congestive heart failure, but mine is minor, so I will probably be fine.
Side note: noticed that my BMI (body mass index) listed on one of the tests is down to 22.9. This means I am now NORMAL! Yayyyyy! It was only a few years ago I was in the obese category. What a difference 65 pounds makes.
Started the asthma medications the week after I got back from Mayo. The albuterol is great stuff in that it gets rid of that sensation of an elephant sitting on my chest, it works within minutes, and it keeps me from hacking up a lung every time I'm near a cigarette or out in the cold. But it's considered a "rescue" medication, so the only time I'll take it regularly is prior to exercise.
The Advair? Too soon to tell. It makes me cough more, and it increases the tremor in my right hand, to the point where I knocked a full glass of ice water on myself when I was out to lunch with the aquacise ladies. Maybe the side effects will subside over time.
Started the Imuran last week. Potential for side effects is quite high, but as Ducky likes to say, sofa so gouda (so far, so good)! I'm only on a half-dose at the moment and will go up to a full one next week.
But I honestly can't tell yet if the Imuran is actually doing me any GOOD. It hasn't affected the fatigue, at least not enough to keep me from needing 10-12 hours of sleep or to keep me from the ever-popular zonking out on the couch. Maybe it takes a long time to become effective?
Went to an Italian restaurant last night to celebrate my sister-in-law's birthday. It was tricky, but I did manage to figure out something they could make that was safe for me to eat, and I was pleased that they were willing to go off their regular menu for me. I had a small steak and grilled carrots without their usual seasoning, a small salad and a scoop of plain vanilla ice cream for dessert.
Here is an example of why it's a good thing I never had kids. My almost 4 year old niece is helping her mom open presents, and she is asked what's in the gift bag, and she yells out, "DOODY!" My sister-in-law looked absolutely mortified, but I was howling with laughter and couldn't stop!
For the time being, I am done looking things up, but unfortunately, this doesn't mean I'm done doing the doctor thing. Tomorrow, I am going to the primary care physician to set up periodic bloodwork to monitor the effects of the Imuran. I also need to get in to see an opthalmologist because I'm having problems with blurry vision and should make sure it's just normal aging and not something else.
Future plans? Well, as far as writing goes, I have lots of plans for articles for But You Don't Look Sick. I want to do one on preparing for a Mayo Clinic visit, I have a couple of books to review, and there are several products I'd like to review.
I also have an iTunes gift card to spend. I've already made a long list of songs I want, so all I've gotta do is download them. Plus, I'm not quite finished tranferring over songs from my CDs, so I'll resume that soon.
Have not heard a peep from my long-term disability insurance company, and they're wayyyy over their self-imposed 45 day limit for replying to my appeal of their benefit denial. But I'm not gonna do anything until after I've got all my notes from Mayo handy. I'm about 99 percent sure I'm getting a second denial anyway, and I want my second appeal to have some new data.
And at some point, I need to tidy up the command center before I start getting into tax return mode. It always looks like a tornado hit by the time I finish filing. My big dilemma this year will be finding out whether my disability pension is taxable.
My freezing fingers are screaming for me to quit. As they say in the movie "Clueless", I'm outtie.
Comments:
I was on Imuran for about 8 months, and recently weaned off it. It didn't seem to do enough for me to justify the risks.
I hope it helps you, makes a big difference. It does, for many people.
I hope it helps you, makes a big difference. It does, for many people.
The rheumatologist over at Mayo originally wanted me to go on CellCept, but my medical insurance doesn't cover it. We settled on Imuran because it's supposed to be "milder" (relatively speaking) than some of the other immunosuppressants, and the strong stuff really should be saved for severe disease causing imminent threat to internal organs and the like. I just hope Imuran does something beneficial.
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