Showing posts with label mystery illness. Show all posts
Showing posts with label mystery illness. Show all posts
Saturday, October 23, 2010
It's Not a Tumor
A few days ago, the Nurse Prac called me at 6pm to let me know the results of the CT scan I had a week and a half ago. (yes, she really called me after hours.)
There was no thymoma (tumor on the thymus), but something abnormal was found going on with my esophagus (lol duh) so I'm being sent to have a esophageal motility test...also called a manometry. I had one of these 2 years ago, and I will say that it is pretty painless, but very uncomfortable.
They stick this long catheter tube down your nose into your stomach. The one I had done before consisted of 10 wet swallows...I ended up having to do way more because the tech said that I kept swallowing when I shouldn't have. I wasn't swallowing on purpose...the spasms were causing the tube to jerk...even almost ripping the tape holding it in place off my nose...it was quite involuntary.
Anyway, I had only one normal swallow.
I'm wondering if maybe my esophagus was dilated or tapered at the end, suggesting achalasia. She seemed to be choosing her words very carefully when she called me...probably as to not scare me...but she never said exactly what was seen on the scan...
My swallowing has gotten worse...I didn't think it was possible...and I just got dilated less than two weeks ago. I actually had a piece of chicken almost come out of my nose...and while trying to take a pill two nights ago, my throat seized up and wouldnt let anything down and the water and pill got propelled out of my mouth onto my bed. *sigh*
So I have a manometry one week and the colonoscopy the next. yay...or not.
Tuesday, October 5, 2010
Changes changes changes
I got a call from the GI doc's office on my way to work informing me that they had canceled my appointment with the oncologist because they will just monitor me at this point since everything had cleared up on the endoscopy....ummm okay...
This worries me a little bit considering I have felt a lot sicker and been in a lot more pain recently. I can't remember the last pain-free day I had. And the fact that my T-cell count was quite high on my blood work is alarming to me.
I'm not going to worry about it. I'm actually tired of it at this point.
I guess I still have the CT scan next week since I'm still not able to swallow very well.
*screams*
Oh...and no one in the medical profession should ever be allowed to tell a patient that they are too young for something. The last two times that I checked into the clinic, the nurse would get to the question about joint replacement and laugh while saying I'm way too young to have that problem...I hate her...it is very rude and inconsiderate...especially given my circumstances...
Anyway...that's one less trip I have to make to that side of town next week.
Yay.
This worries me a little bit considering I have felt a lot sicker and been in a lot more pain recently. I can't remember the last pain-free day I had. And the fact that my T-cell count was quite high on my blood work is alarming to me.
I'm not going to worry about it. I'm actually tired of it at this point.
I guess I still have the CT scan next week since I'm still not able to swallow very well.
*screams*
Oh...and no one in the medical profession should ever be allowed to tell a patient that they are too young for something. The last two times that I checked into the clinic, the nurse would get to the question about joint replacement and laugh while saying I'm way too young to have that problem...I hate her...it is very rude and inconsiderate...especially given my circumstances...
Anyway...that's one less trip I have to make to that side of town next week.
Yay.
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Friday, October 1, 2010
Medical updates
My follow-up visit with the nurse practitioner was this morning.
Ready for the results?
Everything came back normal...with the exception of my T-cell count which was pretty high...and other random blood abnormalities that I consistently have.
What's next, you ask? Well, Monday morning I am having another upper endoscopy to do cultures and sensitivity testing...the yeast is apparently still there...I believe she saw patches on my tongue still.
Then, in two weeks I have to have a CT scan of my chest to make sure I don't have thymoma THEN I go see an oncologist because there are no immune disorder specialists in THE area...and they deal with most of the immune disorders here.
Ready for the finale? I have to have a colonoscopy around the beginning of November. Lawd.
I was assured that they would get to the bottom of whatever was going on. I'm really not accustomed to that kind of treatment from doctors.
I must say that I'm really happy about not getting bad news the day before my birthday, but it's still very frustrating.
I really love everybody in that office.
Ready for the results?
Everything came back normal...with the exception of my T-cell count which was pretty high...and other random blood abnormalities that I consistently have.
What's next, you ask? Well, Monday morning I am having another upper endoscopy to do cultures and sensitivity testing...the yeast is apparently still there...I believe she saw patches on my tongue still.
Then, in two weeks I have to have a CT scan of my chest to make sure I don't have thymoma THEN I go see an oncologist because there are no immune disorder specialists in THE area...and they deal with most of the immune disorders here.
Ready for the finale? I have to have a colonoscopy around the beginning of November. Lawd.
I was assured that they would get to the bottom of whatever was going on. I'm really not accustomed to that kind of treatment from doctors.
I must say that I'm really happy about not getting bad news the day before my birthday, but it's still very frustrating.
I really love everybody in that office.
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Friday, August 27, 2010
I'm sick and tired of being sick and tired.
Literally.
I've been quite sickly for the past five years...progressively so, but as far as anybody had been able to tell me, I was perfectly healthy and as the jerk doctor told me last year, "it won't kill you."
Well, that's not entirely true. Thanks for talking out of your ass though.
On the 17th, I had an upper endoscopy done and I expected to wake up and get a diagnosis...maybe have a dilation done and get some meds, and just live with a condition that I would have to monitor for the rest of my life. Well, i woke up and had my world turned upside down. I'm being a bit dramatic, but it was pretty devastating.
One thing you don't want is to wake up and have the doctor looking at you with a look of complete confusion and worry on his face. I might have imagined all of that, but he was pretty confused.
What did he find, you ask?
Where do I begin...
Candida esophagitis...and I mean extensive infection. The lower part of my esophagus was completely covered with yeast. (I know this because they took pics and printed them out on the discharge papers. cool, huh?) This is usually found in immuno-compromised people, or people with achalasia, scleroderma, or sjogren's syndrome...basically people who are prone to infections because of low immunity or people who have esophageal motility issues.
Next, there were the numerous gastric and duodenal ulcers.
Then, severe gastritis.
After that? Not only did I have a condition called gastric antral vascular ecstasia (GAVE), or watermelon stomach, but my villi were flattened. WHAT IN THE HELL IS GOING ON?!
Watermelon stomach is usually always only seen in people with scleroderma (and sometimes other autoimmune diseases) and chronic renal failure. Flat villi? Yeah, very Celiac like...
Oh, but wait...my biopsies that were taken during the procedure were normal. aaaahhhhhhhhahahahaha
WTF is going on? No. Really?
I'm waiting on the results from all the blood tests ordered after they found all this foolishness. I am baffled.
But this explains all the pain I've been in for the past few months.
I spend my days now taking medicines. And right now, I'm only on three because no one knows what's going on so they are only treating symptoms.
It's so scary though because watermelon stomach is usually a cause of GI bleeding and anemia. A lot of people have to get transfusions and take iron injections. I could have starting bleeding at any time. If I didn't have the sense to leave that loser of a doctor that wasn't treating me, I might have would never have seen another specialist.
And it's nice to know that I keep losing weight because my body is starving because it probably cannot absorb any nutrients due to my villi being flat. ugh.
I love it when people...fat people...call me skinny and say they are envious...fuck you. How about that? Fuck you.
aaaaaaaaaaand before I forget...Propofol? yeah, it's pretty damn nice. way better than demerol + versed cocktail. Shit works fast and you recover way faster. I'm a fan.
I've been quite sickly for the past five years...progressively so, but as far as anybody had been able to tell me, I was perfectly healthy and as the jerk doctor told me last year, "it won't kill you."
Well, that's not entirely true. Thanks for talking out of your ass though.
On the 17th, I had an upper endoscopy done and I expected to wake up and get a diagnosis...maybe have a dilation done and get some meds, and just live with a condition that I would have to monitor for the rest of my life. Well, i woke up and had my world turned upside down. I'm being a bit dramatic, but it was pretty devastating.
One thing you don't want is to wake up and have the doctor looking at you with a look of complete confusion and worry on his face. I might have imagined all of that, but he was pretty confused.
What did he find, you ask?
Where do I begin...
Candida esophagitis...and I mean extensive infection. The lower part of my esophagus was completely covered with yeast. (I know this because they took pics and printed them out on the discharge papers. cool, huh?) This is usually found in immuno-compromised people, or people with achalasia, scleroderma, or sjogren's syndrome...basically people who are prone to infections because of low immunity or people who have esophageal motility issues.
Next, there were the numerous gastric and duodenal ulcers.
Then, severe gastritis.
After that? Not only did I have a condition called gastric antral vascular ecstasia (GAVE), or watermelon stomach, but my villi were flattened. WHAT IN THE HELL IS GOING ON?!
Watermelon stomach is usually always only seen in people with scleroderma (and sometimes other autoimmune diseases) and chronic renal failure. Flat villi? Yeah, very Celiac like...
Oh, but wait...my biopsies that were taken during the procedure were normal. aaaahhhhhhhhahahahaha
WTF is going on? No. Really?
I'm waiting on the results from all the blood tests ordered after they found all this foolishness. I am baffled.
But this explains all the pain I've been in for the past few months.
I spend my days now taking medicines. And right now, I'm only on three because no one knows what's going on so they are only treating symptoms.
It's so scary though because watermelon stomach is usually a cause of GI bleeding and anemia. A lot of people have to get transfusions and take iron injections. I could have starting bleeding at any time. If I didn't have the sense to leave that loser of a doctor that wasn't treating me, I might have would never have seen another specialist.
And it's nice to know that I keep losing weight because my body is starving because it probably cannot absorb any nutrients due to my villi being flat. ugh.
I love it when people...fat people...call me skinny and say they are envious...fuck you. How about that? Fuck you.
aaaaaaaaaaand before I forget...Propofol? yeah, it's pretty damn nice. way better than demerol + versed cocktail. Shit works fast and you recover way faster. I'm a fan.
Tuesday, June 22, 2010
I'm not very good at this blogging thing apparently...
Sorry.
My mystery illness whipped my ass last week. I just started feeling up to doing anything other than sitting on the sofa. Sooooooooo....let's get to it....
Let's start with my mystery illness....once believed to be Sjogren's Syndrome and even CREST syndrome, but now apparently all in my head. I for sure have dryness issues that have at one point been blamed on everything, but they have persisted regardless of medication and amount of water intake. Red, gritty eyes. Dry, bleeding mouth. Cracked, bleeding lips. Cracked, bleeding hands and cuticles. (Let's not even begin with dryness in other places *cough*.) Sexy, huh?
Now, let's move along to the sun sensitivity...How awesome is it to be able to go into the sun for a minimal amount of time...maybe like 30s walking from a vehicle to a car...and end up with a bright pink rash that itches like hell? That is pretty damn awesome huh? No?
Well, what about the joint and muscle pain? Still not cool?
What about extreme fatigue that makes even showering a task? Still not convinced of the greatness?
I know this one should lure you in....esophageal spasms and dysphagia!!!!!!!!!!!! YAY!!!!!!!!!!!!! Everybody wants that, right? You want to
choke on water, bread, chicken, and anything imaginable, correct? You want the forces in your esophagus to be able to shoot liquids out of your mouth? Or wait...you want to have random debilitating spasms that are commonly compared to the pain of heart attacks? The pain that feels like a hot knife is being twisted in your chest and back...that radiates up your neck and into your jaw....
Turned on yet?
Now, imagine that you have all these symptoms and more and not having anything that will make you feel better...even if only temporary.
Add on the stress of going from doctor to doctor, paying hundreds of dollars, only to have them say "nothing's wrong," "you're depressed," "there's nothing i can do for you...i know this affects your quality of life greatly, but the medicine that i know will help you...im afraid that it will lower your blood pressure too much...and you're too young..."
It's not easy to live like this. It gets to the point that you don't even mention when you feel bad anymore. Or you purposely don't tell a doctor everything because it starts to sound excessive.
Nobody ever understands how bad you feel. They just don't understand that I'm not "just tired."
They can't understand how frustrating it is to know that I'm only 28 and I struggle with swallowing food and liquids, and that I'm suffering in silence EVERY SINGLE TIME I take a sip of water or eat a bite of food.
They can't know what it feels like to have people tell you that it's all your head and that you're a hypochondriac. I WISH! I really wish it was a psychological problem.
Ummm....this ended up being a rant...I didn't intend for it to go this way...but I'm tired of being sick.
Here's a summary of what I've gone through
Symptoms:
Physicians:
My mystery illness whipped my ass last week. I just started feeling up to doing anything other than sitting on the sofa. Sooooooooo....let's get to it....
Let's start with my mystery illness....once believed to be Sjogren's Syndrome and even CREST syndrome, but now apparently all in my head. I for sure have dryness issues that have at one point been blamed on everything, but they have persisted regardless of medication and amount of water intake. Red, gritty eyes. Dry, bleeding mouth. Cracked, bleeding lips. Cracked, bleeding hands and cuticles. (Let's not even begin with dryness in other places *cough*.) Sexy, huh?
Now, let's move along to the sun sensitivity...How awesome is it to be able to go into the sun for a minimal amount of time...maybe like 30s walking from a vehicle to a car...and end up with a bright pink rash that itches like hell? That is pretty damn awesome huh? No?
Well, what about the joint and muscle pain? Still not cool?
What about extreme fatigue that makes even showering a task? Still not convinced of the greatness?
I know this one should lure you in....esophageal spasms and dysphagia!!!!!!!!!!!! YAY!!!!!!!!!!!!! Everybody wants that, right? You want to
choke on water, bread, chicken, and anything imaginable, correct? You want the forces in your esophagus to be able to shoot liquids out of your mouth? Or wait...you want to have random debilitating spasms that are commonly compared to the pain of heart attacks? The pain that feels like a hot knife is being twisted in your chest and back...that radiates up your neck and into your jaw....
Turned on yet?
Now, imagine that you have all these symptoms and more and not having anything that will make you feel better...even if only temporary.
Add on the stress of going from doctor to doctor, paying hundreds of dollars, only to have them say "nothing's wrong," "you're depressed," "there's nothing i can do for you...i know this affects your quality of life greatly, but the medicine that i know will help you...im afraid that it will lower your blood pressure too much...and you're too young..."
It's not easy to live like this. It gets to the point that you don't even mention when you feel bad anymore. Or you purposely don't tell a doctor everything because it starts to sound excessive.
Nobody ever understands how bad you feel. They just don't understand that I'm not "just tired."
They can't understand how frustrating it is to know that I'm only 28 and I struggle with swallowing food and liquids, and that I'm suffering in silence EVERY SINGLE TIME I take a sip of water or eat a bite of food.
They can't know what it feels like to have people tell you that it's all your head and that you're a hypochondriac. I WISH! I really wish it was a psychological problem.
Ummm....this ended up being a rant...I didn't intend for it to go this way...but I'm tired of being sick.
Here's a summary of what I've gone through
Symptoms:
- Dry Eyes
- Dry Mouth
- Urinary Frequency
- Urinary Urgency
- Sun Allergy/Photo Contact Dermatitis
- Esophageal Spasm
- Swollen lymph nodes (parotid glands swollen for weeks summer '06; generalized painful swelling fall '08)
- Joint pain
- Joint stiffness
- Fatigue
- Night sweats
- Dry Skin
- Vaginal dryness
- Frequent sinus pressure and pain
- Muscle pain and occasional weakness
- Hives (fall '08)
Physicians:
- 2 Primary Doctors (+1 Physician's Assistant)
- Urologist
- Gastroenterologist
- Rheumatologist
- Allergist
- General Surgeon
Tests/Procedures:
- 2 Upper GI series
- Esophagogastroduodenoscopy
- Esophageal manometry
- HIDA Scan
- Abdominal Ultrasound
- X-rays
- Bloodwork (CBC, ANA, ENA, ANA DIRECT, TSH, METABOLIC/HEPATIC PROFILE, etc)
- Esophageal dilation
- Skin allergy test
- Urinalysis
- Sed Rate
- CPR
Medicines:
- Evoxac
- Restasis
- Mobic
- Levsin
- Symax
- Nexium
- Prilosec
- Aciphex
- Kapidex
- Prevacid
- Protonix
- Zegerid
- Enablex
- Ditropan
- Detrol LA
- Sanctura
I'm completely normal...except for having diffuse esophageal spasms, microcytosis, hypochomia, and abnormal red blood cells.
I think I'm going to vent about this for the rest of the week.
yay.
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