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I'm just curious to see how many of us on EP have rare disorders, conditions, or diseases. If you have one, what is it? What are the symptoms you suffer from it? What are the biggest struggles living with it?
HiddenAnger HiddenAnger 26-30, F 7 Answers Jun 19 in Health

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i think what I have is rare ,it can be classified as ADD but that doesn't really cover it adequately , i struggled to get myself fixed after a miserable life experience a<br />
and requires me to take amphetamines every day .yet they simply have me as I should be ,I'm wired backwards opiates speed me up uppers have me calm and happy .help me sleep . yes I' m unique .unfortunately '

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It sounds like you have it under control, so that's good to hear.

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and hopefully I can stay as such ,no point worrying that what I do now will not work in the future ,I live my life as I like now but I would rather die than relive most of my life it was a nightmare everyday wishing was my last yet worked and did everything
yet inside twas dead

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I know that feeling all too well. Most of the time, I feel like a robot, just going through the motions.

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i had hits and misses with meds . its a biological thing but to find the magic bullet is not often so easy ,At least your doing good in that you can communicate,things will get better they really do ,, just hang in there and do not .repeat do not blame yourself ,life has dealt you a bad hand we both know is not simply feeling down is a medical situation , hold off all negative beliefs of yourself , be your own advocate :D

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Had a 107.2 heatstroke. Broke my hypathalimus and can no longer eat normally. I can only eat small portions daily instead of 3 really good meals. If I eat more than I should, my body heats up like an oven and I'm sick/done for the next few hours. :)

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Yikes! So you can't eat a lot at one time because your body will get too hot trying to digest it because the part of your brain that controls body temperature is permanently damaged from that high fever? I'm so sorry, that must be rough, but at least manageable.

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Sucks a bit, sucked more when I didn't understand it, was sick all the time. Now I just eat through out the day instead of having meals. Kinda sad in itself but I'm still alive dammit.

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Very true. Are there any foods you can't eat because of the amount of calories in it? Do you have a calorie limit on how much you can eat at a time?

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Honestly don't know. I mentally know when to stop now, but can push past it and feel sick knowingly. Only do that on special occasions though. Having your entire body feeling like it has a bad sunburn from the inside until it subsides is quite a turn off.

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Yeah, I bet. So I'm curious... what caused that high fever in the first place?

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Extended heat exhaustion culminating in the heatstroke.

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Oh wow. Yeah, heat stroke is very dangerous. So many people don't really understand how severe the consequences can be for not making sure your body doesn't get too hot

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I was in Basic. Two week to finish when I dropped. All I was told was I said "I'm going down" and woke up in a hospital. My father was already on a plane because they thought I was going to die.

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Omg wow, what a scary thing to go through.

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inherited spinocerebellar ataxia type 2..aphonia.. and symptom are..body and central nervous system break down..muscular seizures..lost ability to speak.. and living with it is just a matter of treating symptoms..so adjusting is the best you can do before it kills you. lol morbid..but I laugh about it because..why cry?

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I'm so sorry, that sounds terrible.

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Thanks but I am okay with it..other people have it worse..they have to live..i get to go..LOL :)

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Well it's good you have a positive outlook. I can't imagine I'd be that strong in your shoes

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Well..you don't really know how you are going to be until you know..then you can choose to be depressed or fight back.. I ain't going out easy..I just know I am going..and I can accept that. :)

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Good for you! That's just amazing. You are a strong man!

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LOL..Nope I am a stubborn man..I want thing to be on my terms. :)

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Awesome! :-)

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Just a rare version of a very common disease, luckily it's a rather innocent version :)

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What is it?

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SDHB mutation of a genetic paraganglion syndroom. In short cancer :)

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Ooh, scary. Is it curable? What are the symptoms

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It's not curable, since it's genetic, I was born with it. The symptoms are mainly growth of tumours in annoying places like vertabras, so I have a little problem in my lower back that keeps me from jogging :)
You can live to be a 100 but if a vertrbra breaks you could get a leasia. The chemo put a big hold on growth so let's see what how long we can manage :D

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Ah, okay. Well it seems like you've accepted it and have a positive outlook, that's great!

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Indeed, so what is your hidden anger :D

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My hidden anger is the anger I have towards my idiot bf that i have to suppress everyday or risk more verbal and mental abuse than I already deal with..

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Isn't it time for some action then, maybe stop being unhappy and leave ? Relations are all the same, either with a partner or an employer, if it doesn't do it for you, quit !

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I'm trying to find a way out, but I'm unable to make my own money due to severe injury. Right now, there's no where I can go. My friend said as soon as her and her bf find a place O can stay with them rent free until I can figure my next move out. So that should happen within the next couple months. I just can't leave a crappy situation to end up even worse as a homeless wreck.

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I'm glad to hear that at least you are looking for a way out because abuse hardly ends by itself. Is there no one that can help you short term like family ?

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Nope, most of my family is dead and the ones who aren't live too far away

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That leaves one option, put meds in his food to clam him down like a tranquilizer, kill him in his sleep if you have too :D

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Lmao yeah if I want to live in an 8X8 concrete cube with steel bars for the rest of my life lol

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If you feed the body to the gators who will know it's you ?
He just didn't come home like before so no need to inform the law right away :D

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The terrible thing is I actually have dreams about murder lately. I looked it up and basically it means I'm gonna snap soon if something doesn't change

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We need more vets, a lot of people need to be put down in my oppinion :)

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The world is pretty filled with evil

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I have CRS disease

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Oh what's that?

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Can't Remember Stuff

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Lol

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I have Spino-Cerebellar Ataxia. That's kind of rare.

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What is that?

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A neurological disorder that attacks the nervous system, mostly affecting motor control. It's similar to Parkinson's Disease, but not fatal. Well, not usually.

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Oh sounds like that would be extremely hard to live with

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It's annoying.

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Is it curable or just treatable?

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Definitely not curable. Not so far.

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That sucks, I'm sorry

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