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Anyone suffer any rare disease
Posted 3/11/13
IDK????
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Posted 3/11/13 , edited 3/11/13

kritter09 wrote:

IDK????


So you don't know if you have a disease?


ichigofes12 wrote:

I am suffering from Kikuchi disease, the doctors here dont even know much about it, they say its only in 3 percent of the worlds population. Been ten month still no well.

anyone else with a rare disease doesnt have to be the same.



wow 3 percent that fucking sucks, I never heard of it though.
Posted 3/11/13
Nope. at least i don't think i do.
Mii753 
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Posted 3/11/13
I have this movement disorder called paroxysmal kinesigenic choreoathetosis (PKC). Mine happens to be hereditary and only 1 in 150,000 people have PKC. It's also more common for it to occur in males and I'm a female. Basically it's triggered by movement in my legs (ie: standing up, walking after standing for a period of time) and causes one half of my body to start writhing and jerking for 15 seconds. Sometimes my head is also included in the half of the body that moves, which is really frustrating because I usually end up pulling a muscle in my neck when it happens :/ Right before I have an episode I feel a slight tingly feeling in my legs, telling me it's about to happen. I guess that's why I used to call it my "tingly feeling". I can usually use this heads up though and stop myself from spazzing. Or if it does end up happening I just make it look as natural as possible. Because of this, people never know anything is wrong unless I tell them.

I first noticed it in the first grade when I was playing kickball. I went to kick the ball, and my right arm and leg started spazzing out while I was running for first base. I would only have it once every other week, so it wasn't very often and I didn't think too much of it because no other kids at school showed any signs of having it. It wasn't a big deal until I got to middle school and hit puberty, when it started happening upwards of 15 times a day. My mom took me to the neurologist near my doctor's office and he thought I had epilepsy. It took two years and two doctors to figure out that it wasn't epilepsy and that it was PKC. Since PKC is so rare, there isn't a specific medication for it, but luckily almost any anti-convulsion medication will work on it. Since then it's been under control and hasn't really been a problem. The only thing it has really affected is my ability to going into the military, but I have found other paths to follow so it's all good.

Since it's caused by sudden physical activity, it kept me from wanting to be invloved in sports and such growing up because I didn't want to have a sudden episode and embarrass myself. I look pretty goofy if I let myself have a full episode. I guess that's one reason I started playing so many video games when I was little. And started watching so much anime lol.
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Posted 3/11/13
I would have never guessed there is THIS many people online that have "diseases" or well that would actually REVEAL it to people, most people seem to be secretive about this.
Mii753 
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Posted 3/11/13
Well, I think since this is a little more anonymous, people don't feel as uncomfortable telling other people. IRL my family knows and I've told my friends briefly about it. But I don't make a big deal about it unless I need to so most of them forget about it anyways. So it isn't really a big deal.
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Posted 3/11/13

Mii753 wrote:

Well, I think since this is a little more anonymous, people don't feel as uncomfortable telling other people. IRL my family knows and I've told my friends briefly about it. But I don't make a big deal about it unless I need to so most of them forget about it anyways. So it isn't really a big deal.


Wow you are a trooper I make sure NO ONE knows about it irl(school)
Well at the end of senior year I told only two people.
I find it EXTREMLY embarrassing.
Mii753 
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Posted 3/11/13

Godoka1 wrote:

Wow you are a trooper I make sure NO ONE knows about it irl(school)
Well at the end of senior year I told only two people.
I find it EXTREMLY embarrassing.


Lol, thanks. I do find it embarrassing when I have one of my little spasms (i forget to take my medicine sometimes) because I can look really goofy. In HS in was in JROTC and on the drill team. If i forgot to take my medicine it was really hard to stand at attention perfectly so I had to tell them about it. But we were all really close and nobody made a big deal about it so that was nice. We would all joke sometimes, but it was all in good spirit. The fact I have it is a little unfortunate, but I can't help that I have it and it isn't something I can change so I've just accepted it. I'm lucky though that it's not too serious. I'm sure actually having epilepsy is much much more troublesome, so I look up to someone like you a bit more. You have much more to deal with than I do.
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Posted 3/11/13
I have Monocular Diplopia. Basically double vision in one eye, which is much rarer than regular double vision which is caused by a problem with the brain interpreting what both eyes see as one image. Now I need to go for a bunch of tests to figure out what's causing it. Best case, Diabetes. Worst case, Cancer. Fingers crossed for Diabetes.

Wow, never thought I'd say that.
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Posted 3/11/13

Mii753 wrote:


Godoka1 wrote:

Wow you are a trooper I make sure NO ONE knows about it irl(school)
Well at the end of senior year I told only two people.
I find it EXTREMLY embarrassing.


Lol, thanks. I do find it embarrassing when I have one of my little spasms (i forget to take my medicine sometimes) because I can look really goofy. In HS in was in JROTC and on the drill team. If i forgot to take my medicine it was really hard to stand at attention perfectly so I had to tell them about it. But we were all really close and nobody made a big deal about it so that was nice. We would all joke sometimes, but it was all in good spirit. The fact I have it is a little unfortunate, but I can't help that I have it and it isn't something I can change so I've just accepted it. I'm lucky though that it's not too serious. I'm sure actually having epilepsy is much much more troublesome, so I look up to someone like you a bit more. You have much more to deal with than I do.


Yeah last one wa like three weeks ago AND I took my medicine AND I got sufficient hours of sleep
I had one before because I missed my medicine BUT it was only by three hours I'm positive that cannot be the reason
And the other was at work I said before and fucked up my mouth because I got two hours of sleep
Paridise
Mii753 
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Posted 3/11/13

hyjinx17 wrote:

I have Monocular Diplopia. Basically double vision in one eye, which is much rarer than regular double vision which is caused by a problem with the brain interpreting what both eyes see as one image. Now I need to go for a bunch of tests to figure out what's causing it. Best case, Diabetes. Worst case, Cancer. Fingers crossed for Diabetes.

Wow, never thought I'd say that.


That's really unfortunate. Hopefully it's not cancer :(


Godoka1 wrote:


Mii753 wrote:


Godoka1 wrote:

Wow you are a trooper I make sure NO ONE knows about it irl(school)
Well at the end of senior year I told only two people.
I find it EXTREMLY embarrassing.


Lol, thanks. I do find it embarrassing when I have one of my little spasms (i forget to take my medicine sometimes) because I can look really goofy. In HS in was in JROTC and on the drill team. If i forgot to take my medicine it was really hard to stand at attention perfectly so I had to tell them about it. But we were all really close and nobody made a big deal about it so that was nice. We would all joke sometimes, but it was all in good spirit. The fact I have it is a little unfortunate, but I can't help that I have it and it isn't something I can change so I've just accepted it. I'm lucky though that it's not too serious. I'm sure actually having epilepsy is much much more troublesome, so I look up to someone like you a bit more. You have much more to deal with than I do.


Yeah last one wa like three weeks ago AND I took my medicine AND I got sufficient hours of sleep
I had one before because I missed my medicine BUT it was only by three hours I'm positive that cannot be the reason
And the other was at work I said before and fucked up my mouth because I got two hours of sleep
Paridise


Aw, that's not good. Seizures can be so dangerous. Does your doctor know why you had it despite taking your medicine? Or does that just happen sometimes?
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Posted 3/11/13 , edited 3/11/13

Mii753 wrote:


hyjinx17 wrote:

I have Monocular Diplopia. Basically double vision in one eye, which is much rarer than regular double vision which is caused by a problem with the brain interpreting what both eyes see as one image. Now I need to go for a bunch of tests to figure out what's causing it. Best case, Diabetes. Worst case, Cancer. Fingers crossed for Diabetes.

Wow, never thought I'd say that.


That's really unfortunate. Hopefully it's not cancer :(


Godoka1 wrote:


Mii753 wrote:


Godoka1 wrote:

Wow you are a trooper I make sure NO ONE knows about it irl(school)
Well at the end of senior year I told only two people.
I find it EXTREMLY embarrassing.


Lol, thanks. I do find it embarrassing when I have one of my little spasms (i forget to take my medicine sometimes) because I can look really goofy. In HS in was in JROTC and on the drill team. If i forgot to take my medicine it was really hard to stand at attention perfectly so I had to tell them about it. But we were all really close and nobody made a big deal about it so that was nice. We would all joke sometimes, but it was all in good spirit. The fact I have it is a little unfortunate, but I can't help that I have it and it isn't something I can change so I've just accepted it. I'm lucky though that it's not too serious. I'm sure actually having epilepsy is much much more troublesome, so I look up to someone like you a bit more. You have much more to deal with than I do.


Yeah last one wa like three weeks ago AND I took my medicine AND I got sufficient hours of sleep
I had one before because I missed my medicine BUT it was only by three hours I'm positive that cannot be the reason
And the other was at work I said before and fucked up my mouth because I got two hours of sleep
Paridise


Aw, that's not good. Seizures can be so dangerous. Does your doctor know why you had it despite taking your medicine? Or does that just happen sometimes?


It seems sometimes its both I have misses my medicine and haven't had a seizure I called her and told her and still no response
She sucks balls I had another doctor but had to switch because I turned 18 and he was awesome but now I have her....

Oh and even better news I said before everytime I have one I gotta wait six months to get my drivers lience and she said if u have more seizures u can lose your memory competly basically she said I would forget my own name my memory has gotten shitier but not that bad

Main reason I want to die
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Posted 3/11/13
An auto-immune issue that causes inflamation in certain parts of the brain whenever I get sick. The effects are just mental, depression type stuff. Can last for months and months and months. Probably have other issues too, but I spent so much of my life going to doctors that I called it quits. Seriously, from when I was 5 to when I was about 13 I saw so many doctors, was on so many different medications to treat this or that, so many diets that were supposed to balance this enzyme or maybe that one, that I now detest going to doctors. And hospitals... Forced admission into mental clinics makes one wary of such things.

I have it easy though compared to what other Hells life has up its sleeve. Guess I don't have any right to complain.
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Posted 3/11/13
Ulcerative Colitis

Not my words but something to explain:

Ulcerative colitis is an inflammatory bowel disease (IBD) of unknown cause. It is characterized by chronic inflammation and ulceration of the lining of the major portion of the large intestine (colon). In most affected individuals, the lowest region of the large intestine, known as the rectum, is initially affected. As the disease progresses, some or all, of the colon may become involved. Although associated symptoms and findings usually become apparent during adolescence or young adulthood, some individuals may experience an initial episode between ages 50 to 70. In other cases, symptom onset may occur as early as the first year of life.

I don't personally think it's rare but unheard of... I always have to explain it.
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Posted 3/11/13
Duchenne Muscular Dystrophy (DMD)

Is the most common Muscular Dystrophy and only affects the male population. It affects 1 in 3600 males. Until the last decade or so, the life expectancy of someone diagnosed with DMD was late teens to early 20s. DMD is caused by a mutation in the Dystrophin gene which is important in muscle development and function. As a result, the most symptoms of this disease include muscle weakness and painful cramps. Most sufferers lose the ability to walk by their early teens. Death usually results from the weakening of the heart muscles to the point where it can no longer function.

I am doing well by comparison to a lot of people suffering from this disease, the researchers have looked at my mutation but have been unable to really figure out why I am doing so well. The most likely answer is that I have a type of mutation that has only been seen in about 3 people worldwide that creates a milder case of the disease.

I cannot walk, but I have not yet lost the ability to transfer myself out of my wheelchair.
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