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Long explanation about my internal thermostat fail.
Friday, 27 February 2009 04:53 pmWell, I now have confirmation: I have Raynaud's Syndrome.
Balls. I wanted a curable illness, goddammit! Now I'm stuck with random, foundationless symptoms forever, or medication intended for other conditions to manage it. :|
Let me start at the beginning.
After five rounds of blood tests, which basically kept coming back a bit shonky, they've figured out I'm not ill and don't have a secret lurking illness, I just have what my doctor described as "more of an immune system" which makes it look like I'm continually fighting an infection that doesn't really exist. I just have more of the little white cell jobbies all the time.
So. After leading my doctors a merry dance for the last few months, we've confirmed that I have Raynaud's.
Raynaud's is usually something you have along side other conditions - like arthritis - because it's not a disease itself, it's a syndrome (which basically means a collection of symptoms someone noticed seem to show up together and react in the same way). In me, however, it's entirely spontaneous. Theoretically, I should be glad I don't have a disease, but the problem is that Raynaud's doesn't have a cure, because you can only treat the symptoms. And no one has bothered to make a medication specifically for the condition, because no one can be bothered.
The problem with that, is that they now have to manage people's conditions with medication designed for everything else. Those who suffer more from the coldness will sometimes be given medication for high blood pressure - but that makes them glow/flush with heat all the time and can cause them to faint regularly from low blood pressure. With my condition, which is both cold and heat related, giving me that medication would just make half of it worse. So now he's trying me on the same thing that he tried on three other patients (which worked excellently on one, and not at all on the other two) which is to put me on antihistamines for a month and see what happens.
Another female patient is currently due to see a dermatologist for his feedback, and once Dr T hears what they have to say about her, he can apply the information to my condition.
Two potential therapies he's heard about on the grapevine, but in his words "sound a bit Dr Spock" are a form of botox and laser treatment to shock the capillaries or something. He's doubtful that those are widely available, but fuck, if it means it can fix my condition I'll go into trials for them.
I'm mostly just hoping that we can get the hyperhydrosis under control, because although I know most people don't even notice, I do and it makes me uncomfortable. With summer coming up, I'd like to get it sorted sooner rather than later.
Meh. It's pretty sad, isn't it, when you'd rather have the tumour than the syndrome because it'd mean you'd actually get proper treatment?
Balls. I wanted a curable illness, goddammit! Now I'm stuck with random, foundationless symptoms forever, or medication intended for other conditions to manage it. :|
Let me start at the beginning.
After five rounds of blood tests, which basically kept coming back a bit shonky, they've figured out I'm not ill and don't have a secret lurking illness, I just have what my doctor described as "more of an immune system" which makes it look like I'm continually fighting an infection that doesn't really exist. I just have more of the little white cell jobbies all the time.
So. After leading my doctors a merry dance for the last few months, we've confirmed that I have Raynaud's.
Raynaud's is usually something you have along side other conditions - like arthritis - because it's not a disease itself, it's a syndrome (which basically means a collection of symptoms someone noticed seem to show up together and react in the same way). In me, however, it's entirely spontaneous. Theoretically, I should be glad I don't have a disease, but the problem is that Raynaud's doesn't have a cure, because you can only treat the symptoms. And no one has bothered to make a medication specifically for the condition, because no one can be bothered.
The problem with that, is that they now have to manage people's conditions with medication designed for everything else. Those who suffer more from the coldness will sometimes be given medication for high blood pressure - but that makes them glow/flush with heat all the time and can cause them to faint regularly from low blood pressure. With my condition, which is both cold and heat related, giving me that medication would just make half of it worse. So now he's trying me on the same thing that he tried on three other patients (which worked excellently on one, and not at all on the other two) which is to put me on antihistamines for a month and see what happens.
Another female patient is currently due to see a dermatologist for his feedback, and once Dr T hears what they have to say about her, he can apply the information to my condition.
Two potential therapies he's heard about on the grapevine, but in his words "sound a bit Dr Spock" are a form of botox and laser treatment to shock the capillaries or something. He's doubtful that those are widely available, but fuck, if it means it can fix my condition I'll go into trials for them.
I'm mostly just hoping that we can get the hyperhydrosis under control, because although I know most people don't even notice, I do and it makes me uncomfortable. With summer coming up, I'd like to get it sorted sooner rather than later.
Meh. It's pretty sad, isn't it, when you'd rather have the tumour than the syndrome because it'd mean you'd actually get proper treatment?
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