Some of you know of my illnesses but for those who don't I'll try to summarize it. The reason I'm writing this is because my psychiatrist recommended that I open up a bit more about my conditions and talk about it rather than just cropping it up. Besides I think it's pretty cool that I'm going to a special team of doctors. Didn't even know such a team even existed here. I looked them up and there's loads of articles about them solving cases when everyone else has given up. Hopefully I can be one of those cases too.
(Lengthy summary of my illnesses)
In october 2013 I started coughing up large bloodclots. I was diagnosed with a congenital defect called intralobar lung sequestration.
I happened to be one of the worst cases of this defect any doctor had ever encountered.
I had a malicious aorta sized artery that branched off from my aorta into my lungs where it spread into a small bloodflow in my right lung. Due to the high pressure of the massive artery it slightly tore and bled into my lungs. I was referred to one of the top surgeons in the country and he removed half of my right lung by laparascopy.
Normally lungs tend to recover fairly well but unfortunately that's not the case with me. My current lung capacity is still only ~55%
I can still function normally but walking up a set of stairs or talking a lot requires me to catch my breath.
So that's part 1 of my illnesses.
Around this time my insomnia got much worse as well. Couldn't function during the day but I take 2 sleeping pills each day and it has helped me tremendously. Always had trouble falling asleep, even as a baby but it only became problematic around this time.
Due to the surgery I had to drop out of nursing school because the recovery took months and I struggled with depression for a while. I cured it fairly fast with therapy and an antidepressant though. Then I developed the condition that pains me the most currently; chronic leg pains.
My lower legs hurt incredibly bad every second of the day. I take the max dosage of an opiate painkiller (Tramadol) but it's only just bearable. Imagine the feeling of a dull but constant pain with a slight touch of burning sensation. I also lost sensation to touch in a large area of my lower left leg but pinching the spot is excruciatingly painful.
An EMG test showed my nerves are 100% working despite the loss of sensation and pain.
Specialists still haven't been able to find a cause or cure.
Now to the third and final part of my illnesses;
in April 2014 I suffered from a psychotic attack in the middle of the night. I don't remember anything but the last I remember is being in the ER and seeing bees everywhere and weird cartoon figures dancing around. Medication side-effects were ruled out and I was admitted to a mental ward for 2 weeks. The hallucinations stopped by the time I arrived there. Nothing happened during those 2 weeks and the psychiatrists ruled out mental illness because of the very short duration of the psychotic attack (only 8 hours or so).
I've had similar attacks 4 or 5 times since then but not as bad.
I was then admitted to the hospital for a 7-day brain monitoring. Epilepsy was also ruled out and nothing strange showed up in the results.
I have a 7,5cm x 3,5 x 1,9 brain cyst in the back of my brains around the brainstem and cerebellum but specialists think it's very unlikely the cyst could cause those attacks and hallucinations. So again, nobody could answer why this was happening to me and how to prevent/cure it.
The pain in my legs is so bad nowadays that I'm unable to attend class or get a job.
I've had to give up my hobbies (fitness, cycling, ...) because of it too. For some odd reason my legs can't handle any sort of strenuous activity anymore. Less than a minute on a bicycle will make my legs cramp and give out.
I do go out with friends when I can but I can no longer stand to party till the early morning.
I haven't had any psychotic attacks for almost a year now but recently I've started to hallucinate permanently. Anything in my peripheral view will start to move/twitch.
An example is a doorknob quickly moving left/right.
Now back to the actual topic; I saw my psychiatrist/neurologist this week and he referred me to a specialized team of top doctor that attempt to diagnose cases nobody else has found the answers to. Pretty much exactly like Dr. House's team in the show House MD.
I have to wait around 3 months until there's a spot for me but I hope I'll finally get some answers and maybe even a cure for everything that I'm going through.
Feel free to ask me anything.
(Lengthy summary of my illnesses)
In october 2013 I started coughing up large bloodclots. I was diagnosed with a congenital defect called intralobar lung sequestration.
I happened to be one of the worst cases of this defect any doctor had ever encountered.
I had a malicious aorta sized artery that branched off from my aorta into my lungs where it spread into a small bloodflow in my right lung. Due to the high pressure of the massive artery it slightly tore and bled into my lungs. I was referred to one of the top surgeons in the country and he removed half of my right lung by laparascopy.
Normally lungs tend to recover fairly well but unfortunately that's not the case with me. My current lung capacity is still only ~55%
I can still function normally but walking up a set of stairs or talking a lot requires me to catch my breath.
So that's part 1 of my illnesses.
Around this time my insomnia got much worse as well. Couldn't function during the day but I take 2 sleeping pills each day and it has helped me tremendously. Always had trouble falling asleep, even as a baby but it only became problematic around this time.
Due to the surgery I had to drop out of nursing school because the recovery took months and I struggled with depression for a while. I cured it fairly fast with therapy and an antidepressant though. Then I developed the condition that pains me the most currently; chronic leg pains.
My lower legs hurt incredibly bad every second of the day. I take the max dosage of an opiate painkiller (Tramadol) but it's only just bearable. Imagine the feeling of a dull but constant pain with a slight touch of burning sensation. I also lost sensation to touch in a large area of my lower left leg but pinching the spot is excruciatingly painful.
An EMG test showed my nerves are 100% working despite the loss of sensation and pain.
Specialists still haven't been able to find a cause or cure.
Now to the third and final part of my illnesses;
in April 2014 I suffered from a psychotic attack in the middle of the night. I don't remember anything but the last I remember is being in the ER and seeing bees everywhere and weird cartoon figures dancing around. Medication side-effects were ruled out and I was admitted to a mental ward for 2 weeks. The hallucinations stopped by the time I arrived there. Nothing happened during those 2 weeks and the psychiatrists ruled out mental illness because of the very short duration of the psychotic attack (only 8 hours or so).
I've had similar attacks 4 or 5 times since then but not as bad.
I was then admitted to the hospital for a 7-day brain monitoring. Epilepsy was also ruled out and nothing strange showed up in the results.
I have a 7,5cm x 3,5 x 1,9 brain cyst in the back of my brains around the brainstem and cerebellum but specialists think it's very unlikely the cyst could cause those attacks and hallucinations. So again, nobody could answer why this was happening to me and how to prevent/cure it.
The pain in my legs is so bad nowadays that I'm unable to attend class or get a job.
I've had to give up my hobbies (fitness, cycling, ...) because of it too. For some odd reason my legs can't handle any sort of strenuous activity anymore. Less than a minute on a bicycle will make my legs cramp and give out.
I do go out with friends when I can but I can no longer stand to party till the early morning.
I haven't had any psychotic attacks for almost a year now but recently I've started to hallucinate permanently. Anything in my peripheral view will start to move/twitch.
An example is a doorknob quickly moving left/right.
Now back to the actual topic; I saw my psychiatrist/neurologist this week and he referred me to a specialized team of top doctor that attempt to diagnose cases nobody else has found the answers to. Pretty much exactly like Dr. House's team in the show House MD.
I have to wait around 3 months until there's a spot for me but I hope I'll finally get some answers and maybe even a cure for everything that I'm going through.
Feel free to ask me anything.