good news, bad news

[nixly]

I'm not sure if I said I'm ill, but I am. Have been for almost 5 years.
I usually don't have really good things to share about it, but I kinda do now Just came back from a few doctor visits!

A few tests the doctors ran, came back negative. I'm not going to bore you with names I don't even remember, but one of them was HIV (the virus that causes AIDS - I'm not sure it's the same in English) Witch is a total relief! I'm not sure how I would have gotten it in the first place, but I'm so glad and happy right now!

[M_a_K]

Well its good that you don't have it but i got a scare. I misread it as you do have HIV.
Thank God that it is not so.

[Shadowcat]

Oh I'm so glad to hear that it is not HIV. Yay, but it is still frustrating not knowing what is making you ill. I hope you find out soon, and I hope it's nothing serious and treatable. Keep us updated.

[Nightcat]

I know what its like to be sick and not know why. It took 4 months to find out I had fibromyalgia and I still don't know what made me so sick in 2007. I can't imagine being ill for 5 years and still wondering what's wrong. My thoughts are with you and I hope that you find out what's going on soon.

[nixly]

Sorry I gave you a scare MAK, wasn't my intention

Is it possible to heal from fibromyalgia? It kinda seems similar to the Chronic fatigue syndrome in some ways.

well ... Do you know Epstein-Barrvirus? It causes Pfeiffer's disease. That's what's wrong me; the virus is active inside my body for almost 5 years. Witch doesn't make sense, since the body can defeat it within a half a year, and after a year it's no longer visible in the blood. (sure sometimes it takes 1.5 years/2 years)

It's more why doesn't this go away, probably has an underlying condition. The Chronic fatigue syndrome Centrum I have to go to has a few doctors specialized in Pfeiffer's disease, So I hope they'll know more. (but they are so busy I have to wait till 27 September before they have time for me - so my doctor and a few colleges of her are trying all sorts of blood tests)

[Oracle]

I know your pain girl. I see an eye specialist and I have to plan my appointment almost 6 months in advance! Anyway, just take care of yourself (and the same goes to you guys, Liz and Keiy!)

[Nightcat]

The fibro can be masked, but I can never really heal from it. I also have Systemic Hypermobility and it caused my joints to be really funky. I really don't know how to explain it other than its an extreme form of Double Jointedness.
As for what you have, we think that's what made me so sick in 2007, though my Mono case was not the same kind. There are four versions of it, but we don't know which one I had or even if that's what I had at all. I can't imagine going through that again for 5 years. Four months was more than enough for me.

[nixly]

Tomorrow ... I'm so nervous! I finally get to be checked up for the first time in the hospital - they finally have some time for me!
Sorry I'm kinda to nervous to RP - Reality is moving

I'll let you know if they tell me anything tomorrow (witch I dough, but I can always hope!)

[Nightcat]

You are in my thoughts Nixly. Just concentrate on yourself and on getting better.

[Mindcontrol]

I'll keep you in my prayers Nixly. I hope everything goes perfectly well for you.

[M_a_K]

you will be in my thoughts nixly. hopefully you will get good news

[Shadowcat]

Good Luck, Nixly!!! We will be waiting to hear from you.

[nixly]

Well I got news!
The doctor imminently explained why I don't have Pfeiffer's disease, and I beat the virus quite some time ago. He showed me that I'm a false positive, (the test is very good, but can be fooled sometimes - causing a false positive in my case. I'll probably show positive all the time for Epstein-Barrvirus) (the doctor is a specialist in infectious diseases, fibromyalgia, Chronic fatigue syndrome and others in that region.)

But much to my surprise, I even scored 6/18 when he tried pressed my pressure points for fibromyalgia...

And I'm being tested. In Oktober I should have the final result. All tests are to find out if I have Chronic fatigue syndrome. I always toughed I missed a few important symptoms for that, but it turns out I don't. (as I don't have joint pain, but due have muscle pain)

The doctor won't say I have Chronic fatigue syndrome, he wants to exclude all other possibilities first, but I'm kinda sure it might be that - the Epstein-Barrvirus is one of the 3 viruses know to cause CVS, so yea ... Not that I'm really hoping for that diagnose, but then at least I'll know
(And a chronic heart, long, kidney, liver, ect. condition isn't that appealing either XD)

[Oracle]

That's great that you got some news, and good ones about that false positive. Here's hoping for some even greater news in October!!!

[nixly]

I got my diagnose ...
I have CVS .. or CFS in english. Chronic Fatigue syndrome.
When I went to pick up my diagnose, they doc also mentioned that I have to stop school. It's to energy draining. I also can't work. Have to do some reviving therapy first. Fysico, or something.

Funny tough, Since I'm not allowed to do anything, I'm kinda more busy then ever. Finally doing all the stuff I didn't do because I didn't have the energy.

After trying to explain that to my grandparents, my granddad got the idea stuck in his head that I will never be able to work. Trying to explain that I'm going on therapy because I will most likely able to work after that, is useless. My boyfriend had quite the scare, but he's sticking with me ... thankfully ... I'm glad he still wants me.

On a happier note, tomorrow (1 November) it's my dad's birthday!