Maybe that is why I have always been drawn to the night sky, even though I am scared of the dark- that little glimmer...who knows?
It has been a very tough couple of years, medically speaking. I had sinus surgery in March, which I think I wrote about. The healing process was very slow and painful, and I am honestly not sure if it is over with or not at this point, as I am still having issues. I am doing my best to stay on top of things though.
After all of that, I had an MRI of my brain, with contrast. (This was in May) it shows a few tiny foci of increased T2 signal in the cerebral white matter, and a small retention cyst in the left maxillary sinus, and the bony coating over the left superior semicircular canal appears thin. Great.
This doc also ran tests for syphilis and lyme antibodies- both negative, thank heavens.
He sent me for vestibular testing and I was diagnosed with vestibular neuritis/labyrinthitis, and I have to go to see a vestibular physical therapist about once a week to learn exercises to train my brain to not think that I am dizzy/falling all of the time. It is getting a bit better, I think, and my VPT says that I am showing improvement, so that is good. my level of vertigo/headache/stability realy varies day to day, but I do my best, and try to keep up with my exercises at home.
My coughing and ENT weirdness continues, and I remain in debilitating pain, so I get sent for more and more tests. I have been exposed to so much radiation over the past month or two, it is insane. I did have a basic meta done in early October and the results were mostly in range, so that is good. Creatinine SLIGHTLY high, which is to be expected of someone with kidney disease, such as me, but only ever so slight, so actually really good.
I had a full pulmonary function test last week, and it showed that I have mild obstructive ventilatory deficit and mild diffusion defect, which apparently means that I can neither breathe in nor out as much as I should be able to.
There are many more tests to go over, but I am too tired to type any more right now.
I will try to be better at updating this, but no promises, haha.
Showing posts with label illness. Show all posts
Showing posts with label illness. Show all posts
Tuesday, October 25, 2016
Friday, March 20, 2009
I am so confused.
As previously noted, the allergist had his secretary call to cancel my appointment for today, even though I bent over backwards to make sure he had everything he "needs" after he threw me out without running the tests LAST WEEK when he was supposed to do them.
I showed up today and simply greeted the secretary politely and quietly and said that I wanted all of the records that I had brought in returned to me right then and there, and also the records of the tests he had done, since he had outright refused to tell me the results when they came in while I was in the office a week ago. (He actually claimed that they were not there, but I know that they were because my PCP said they were and teh secretary told me that those were what she brought in while I was in there.)
She said that she was told that all of the results were "normal" (mind you, I had to wait for these records to be faxed over because supposedly when they arrive (even though I had requested them the week before- copies for myself, that is) the doctor scans them into a computer and shreds the paper. Okay, except why didn't he just mail me the paper copy since I wanted them anyway?
Anyway, the results show a few flags for abnormality:
White Blood Count 11.1 Normal is 4.0-11.0 so that is not TOO bad and is certainly lower than I have been... but it is still flagged.
MPV is flagged because it is 12.2 and normal is 9.6-12.0, Carbon Dioxide is 32, normal is 20-31.
Total Bilirubin is 0.2 and normal is 0.3-1.2
Three things that stand out as BIG TIME NOT NORMAL are:
1~ Complement 3, Serum- 169- normal is 79-152
2~ My sedimentation rate is 47, and normal is 0-20.
3~ Anti Nuclear Antibody test was POSITIVE.
These are all a pretty big deal, from what I gather, and not only was I not contacted with the information, I was outright lied to in being told it was not there AND I was refused treatment due to a lack of paperwork that had nothing to do with the tests that (still) need to be done.
Now, moving on to the kidney doctor, I went on March 11th for an appointment, and the doctor said to come off of the Bumex. She said (in front of my mother) that if I was on diuretics that I "would wind up on dialysis and die" so I need to stop immediately. I'd already taken the Bumex for the day, so I stopped the next day. She also said that she wants me to see a colleague of hers at a major hospital and that it is urgent that I do so, but that I need to get some testing done, so she took blood and urine tests and said to come back in a week.
My WBC was 11.3- normal according to this one is 10.3- either way, still high.
Osmolality urine listed at 362 with normal being 500-800.
Now, she didn't mention anything about this to me, she just handed me my results after a very brief appointment in which she poked my ankles a little (without taking off my shoes or socks) and noted that it put me in agony, she noted that I gained weight and swelling while off the diuretic and suggested I go back on one, to which my boyfriend replied "but won't she wind up on dialysis and die from that?" and she said "Well that is why I really don't want her on them.."
but she just said she did... but now she doesn't... but she does... but she won't give me a prescription, and so I remain on nothing.
She had her secretary give me the number for her colleague and I called to try to make an appointment and was told that I couldn't have an appointment til May. I explained that my doctor considered this urgent due to the extremity of the situation and I really couldn't wait that long and that I have records and such and was not even allowed to take the May appointment as a holding spot for just in case, I was told to have the records faxed. I called my nephrologists' office and told them what was going on, I was told that they would call over and get things straightened out and call me back, but of course, I did not get a call and now it is 9pm on a Friday and I will have to wait til Monday.
I showed up today and simply greeted the secretary politely and quietly and said that I wanted all of the records that I had brought in returned to me right then and there, and also the records of the tests he had done, since he had outright refused to tell me the results when they came in while I was in the office a week ago. (He actually claimed that they were not there, but I know that they were because my PCP said they were and teh secretary told me that those were what she brought in while I was in there.)
She said that she was told that all of the results were "normal" (mind you, I had to wait for these records to be faxed over because supposedly when they arrive (even though I had requested them the week before- copies for myself, that is) the doctor scans them into a computer and shreds the paper. Okay, except why didn't he just mail me the paper copy since I wanted them anyway?
Anyway, the results show a few flags for abnormality:
White Blood Count 11.1 Normal is 4.0-11.0 so that is not TOO bad and is certainly lower than I have been... but it is still flagged.
MPV is flagged because it is 12.2 and normal is 9.6-12.0, Carbon Dioxide is 32, normal is 20-31.
Total Bilirubin is 0.2 and normal is 0.3-1.2
Three things that stand out as BIG TIME NOT NORMAL are:
1~ Complement 3, Serum- 169- normal is 79-152
2~ My sedimentation rate is 47, and normal is 0-20.
3~ Anti Nuclear Antibody test was POSITIVE.
These are all a pretty big deal, from what I gather, and not only was I not contacted with the information, I was outright lied to in being told it was not there AND I was refused treatment due to a lack of paperwork that had nothing to do with the tests that (still) need to be done.
Now, moving on to the kidney doctor, I went on March 11th for an appointment, and the doctor said to come off of the Bumex. She said (in front of my mother) that if I was on diuretics that I "would wind up on dialysis and die" so I need to stop immediately. I'd already taken the Bumex for the day, so I stopped the next day. She also said that she wants me to see a colleague of hers at a major hospital and that it is urgent that I do so, but that I need to get some testing done, so she took blood and urine tests and said to come back in a week.
My WBC was 11.3- normal according to this one is 10.3- either way, still high.
Osmolality urine listed at 362 with normal being 500-800.
Now, she didn't mention anything about this to me, she just handed me my results after a very brief appointment in which she poked my ankles a little (without taking off my shoes or socks) and noted that it put me in agony, she noted that I gained weight and swelling while off the diuretic and suggested I go back on one, to which my boyfriend replied "but won't she wind up on dialysis and die from that?" and she said "Well that is why I really don't want her on them.."
but she just said she did... but now she doesn't... but she does... but she won't give me a prescription, and so I remain on nothing.
She had her secretary give me the number for her colleague and I called to try to make an appointment and was told that I couldn't have an appointment til May. I explained that my doctor considered this urgent due to the extremity of the situation and I really couldn't wait that long and that I have records and such and was not even allowed to take the May appointment as a holding spot for just in case, I was told to have the records faxed. I called my nephrologists' office and told them what was going on, I was told that they would call over and get things straightened out and call me back, but of course, I did not get a call and now it is 9pm on a Friday and I will have to wait til Monday.
Thursday, March 12, 2009
Hmmm...
Okay, so I guess I should do a medicine update since it has changed a bit.
I went off the Maxzide and was put back on Lasix then I was taken off of those and but on Bumex after I'd been given Lasix by IV several times a day while I was in the hospital, but not discharged with anything...
Now the kidney doctor does not want me on any diuretics because she says that she has seen too may patients start on them as young as me and wind up n dialysis and doe because of it, so she sent me for the aforementioned tests and x-rays and wants me to return next week and she wants me to go see one of her colleagues and a major hospital.
My PCP seems a little miffed because he thinks I will be upset with him when I swell up again and have no diuretic to counteract it- but they aren't DOING anything, so what it the point? I mean, I was on the Bumex a couple of weeks ago when I went to the ER after gaining 10 pounds in 2 hours, so really... I'm mad that I am swollen, and scared... but I swelled up on May 9th, 2008, out of the blue before I ever met this doctor.
The PCP did say that I had a positive ANA a few times so that I might have lupus, but I have no idea.. I have heard that before. I don't know what to think. I need to ask around and find out what I need to do to get an answer on that one.
Tomorrow, I am having the scratch tests at the allergist office, and hopefully after that, I will be able to take my Zyrtec, because the last time I took it was last Friday morning and I am itchy as anything night now!!!
Anyway, the current meds:
Lantus
Humalog 75/25 (though I have lowered the dosage)
Topamax
Levoxyl
Diovan
Zyrtec (except for this week because of the allergy test)
Albuterol (as needed)
Ranitadine (as needed)
I think that is everything.
I went off the Maxzide and was put back on Lasix then I was taken off of those and but on Bumex after I'd been given Lasix by IV several times a day while I was in the hospital, but not discharged with anything...
Now the kidney doctor does not want me on any diuretics because she says that she has seen too may patients start on them as young as me and wind up n dialysis and doe because of it, so she sent me for the aforementioned tests and x-rays and wants me to return next week and she wants me to go see one of her colleagues and a major hospital.
My PCP seems a little miffed because he thinks I will be upset with him when I swell up again and have no diuretic to counteract it- but they aren't DOING anything, so what it the point? I mean, I was on the Bumex a couple of weeks ago when I went to the ER after gaining 10 pounds in 2 hours, so really... I'm mad that I am swollen, and scared... but I swelled up on May 9th, 2008, out of the blue before I ever met this doctor.
The PCP did say that I had a positive ANA a few times so that I might have lupus, but I have no idea.. I have heard that before. I don't know what to think. I need to ask around and find out what I need to do to get an answer on that one.
Tomorrow, I am having the scratch tests at the allergist office, and hopefully after that, I will be able to take my Zyrtec, because the last time I took it was last Friday morning and I am itchy as anything night now!!!
Anyway, the current meds:
Lantus
Humalog 75/25 (though I have lowered the dosage)
Topamax
Levoxyl
Diovan
Zyrtec (except for this week because of the allergy test)
Albuterol (as needed)
Ranitadine (as needed)
I think that is everything.
Tuesday, January 13, 2009
Welcome!
I guess I should start with the basics.
I am looking for answers in a world where I can not seem to find any.
It seems that I have too many medical issues at once to get anyone to take me seriously.
I am a 29 year old female.
I h ave Type I (juvenile onset) diabetes and have been insulin dependent since childhood.
The word "brittle" has been used to describe me, and I have struggled with controlling my sugars, but I do the best that I can. My last GH A1c was 10.2, which although still high, was an improvement from my "normal" range of 13-14.
I was improving.
I have fibromyalgia, which was diagnosed in 1999. It has been treated only with a very small dose of Topamax for the past three or four years.
I have asthma, which tends to be triggered by extreme heat or cold, humidity, and wind.
I have hypothyroidism.
My cholesterol is apparently borderline high. I was on Lipitor for a while several years ago, but got debilitating back pain from it and was taken off of it.
I currently take:
Lantus (insulin)
Humalog 75/25 (insulin)
Topamax
Levoxyl
Maxzide
Zyrtec
Albuterol as needed
Ranitidine as needed
In early May, I started swelling up for no known reason. I was walking around all day long in a size 14 jeans. I came home and was going to watch movies with my boyfriend. It was a rainy day, and we were staying in, so I changed into my pajamas. I went to put my feet up on his lap, and we both realized very quickly that something was wrong. I was swollen like a balloon.
When we went to lay down, he noted that my breathing sounded funny. He said it sounded like "pop rocks" or like "wringing out a wet sponge" and the swelling was just terrible.
I went to put my jeans back on. No luck. I tried a size larger and so forth... got to the one pair of size 18s (with a lot of stretch to them- more like a 20) that I had and just barely got them on. When we finally got to the hospital, I weighed in at 30lbs heavier than I had been that morning.
I was hyperventilating pretty badly and they didn't even give me oxygen. They took some blood, gave me an ativan, told me it was IN MY HEAD and sent us on our way.
2 days later, I was still no better, and about 20lbs heavier still. We went to a different hospital. They gave me oxygen and took more blood and said they didn't know what was wrong, but mentioned that the previous hospital had mentioned that I have lupus, which they certainly didn't tell ME... so I freaked out. Then they basically said since I wasn't going to die that very night (that is what they said, actually) then there was nothing they could do and I had to go.
No answers as to why I put on 30lbs in 3 hours and 50lbs in 2 days. Great.
I went to a hematologist who took a lot of blood, but got no answers. Got a new PCP, who sent me to a kidney specialist, who told me that my kidneys are fine. I got put on Lasix and Maxzide and then taken off of the Lasix and put back on then taken off again being told that it was dehydrating me.
I got debilitating back pain right before Christmas. Out of the clear blue sky. No one could give me answers. Finally, I had the idea to call my PHARMACY and have them run a check on all of my meds. What do you know? Zocor, which I was on for my not-all-that-high-cholesterol, is in the same family as Lipitor was. We don't know for certain that it was the culprit, but I stopped taking it, and eventually, the back pain greatly lessened. Hrmmph.
There is more, but I need to stop for now.
If you have any input at all, please feel free to e-mail me and/or comment here.
If you know who I am, please do not use my name.
I am keeping this a nameless blog.
Thank you.
I am looking for answers in a world where I can not seem to find any.
It seems that I have too many medical issues at once to get anyone to take me seriously.
I am a 29 year old female.
I h ave Type I (juvenile onset) diabetes and have been insulin dependent since childhood.
The word "brittle" has been used to describe me, and I have struggled with controlling my sugars, but I do the best that I can. My last GH A1c was 10.2, which although still high, was an improvement from my "normal" range of 13-14.
I was improving.
I have fibromyalgia, which was diagnosed in 1999. It has been treated only with a very small dose of Topamax for the past three or four years.
I have asthma, which tends to be triggered by extreme heat or cold, humidity, and wind.
I have hypothyroidism.
My cholesterol is apparently borderline high. I was on Lipitor for a while several years ago, but got debilitating back pain from it and was taken off of it.
I currently take:
Lantus (insulin)
Humalog 75/25 (insulin)
Topamax
Levoxyl
Maxzide
Zyrtec
Albuterol as needed
Ranitidine as needed
In early May, I started swelling up for no known reason. I was walking around all day long in a size 14 jeans. I came home and was going to watch movies with my boyfriend. It was a rainy day, and we were staying in, so I changed into my pajamas. I went to put my feet up on his lap, and we both realized very quickly that something was wrong. I was swollen like a balloon.
When we went to lay down, he noted that my breathing sounded funny. He said it sounded like "pop rocks" or like "wringing out a wet sponge" and the swelling was just terrible.
I went to put my jeans back on. No luck. I tried a size larger and so forth... got to the one pair of size 18s (with a lot of stretch to them- more like a 20) that I had and just barely got them on. When we finally got to the hospital, I weighed in at 30lbs heavier than I had been that morning.
I was hyperventilating pretty badly and they didn't even give me oxygen. They took some blood, gave me an ativan, told me it was IN MY HEAD and sent us on our way.
2 days later, I was still no better, and about 20lbs heavier still. We went to a different hospital. They gave me oxygen and took more blood and said they didn't know what was wrong, but mentioned that the previous hospital had mentioned that I have lupus, which they certainly didn't tell ME... so I freaked out. Then they basically said since I wasn't going to die that very night (that is what they said, actually) then there was nothing they could do and I had to go.
No answers as to why I put on 30lbs in 3 hours and 50lbs in 2 days. Great.
I went to a hematologist who took a lot of blood, but got no answers. Got a new PCP, who sent me to a kidney specialist, who told me that my kidneys are fine. I got put on Lasix and Maxzide and then taken off of the Lasix and put back on then taken off again being told that it was dehydrating me.
I got debilitating back pain right before Christmas. Out of the clear blue sky. No one could give me answers. Finally, I had the idea to call my PHARMACY and have them run a check on all of my meds. What do you know? Zocor, which I was on for my not-all-that-high-cholesterol, is in the same family as Lipitor was. We don't know for certain that it was the culprit, but I stopped taking it, and eventually, the back pain greatly lessened. Hrmmph.
There is more, but I need to stop for now.
If you have any input at all, please feel free to e-mail me and/or comment here.
If you know who I am, please do not use my name.
I am keeping this a nameless blog.
Thank you.
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