VERY frightened.

Deep breath Ann . . . Friday is still a long ways off . . . but you can do this. The dx will NOT change anything. Whatever your disease is, IT IS ALREADY. What a dx WILL do is get you proper help Tie a knot in that rope and hang on. Anxious thoughts rob you of precious energy and take away even more than the disease does. Some hot tea for you!! Blessings!

Before my husband read about lupus and pointed out I had so many of the problems associated with it I was sure what ever it was that was wrong with me was killing me and that it was speeding up as time passed. Whatever is wrong has been wrong for a while and at least your doctors see something is wrong. I was getting weaker and sicker and the doctors I was seeing refused to see what was happening to me. Once my husband showed me that it looked an awful lot like lupus- and he did major research first knowing how scared I was and that my family history is really bad for people dying- I realized that so long as I could find a doctor who would listen and do something I had a fighting chance. I had tried researching my symptoms on my own online and what I found there were some really scary problems. I made myself a promise there and then, that I would not research any diseases until I had a diagnosis because all my own research did was scare the begezus out of me.

Besides which being scared, worried, or stressed takes too much energy. Instead focus on accepting that you need a good doctor who is willing to look for what is wrong instead of doctors who say we don't know and thus give up. Because you never know, it is possible that all your problems are caused by something they can fix. Hold out the hope that what is wrong can be fixed, because thinking you are dying is a horrid place to be. I know from experience. I have even come darned close to dying a couple times, but thankfully I did not allow myself to become fatalistic and give up because my rheumy saved my life more than once since I started seeing her. Now I may have several serious chronic conditions but I also have hope. Treatment has made such a difference in my life. I used to have so little strength and energy that I literally could not take care of myself, I could barely go from bed to bathroom. Today I am not allowed to do much because of the baby, but I was beginning to walk farther and farther without even a cane and was finally getting my life back. I know that you are in a worse place than even I was because a lot of what is happening you can visably see, for me it wasn't always readily apparent by looking at me just how weak I had become. I came darned close to being a complete invalid though because of the amount of pain that I was in. Even sitting was torture. The pain may not be fully controlled- they can't do that until they figure out what is causing the inflammation in my spine but thanks to first Humira and then Enbrel I can handle it better.

What I am trying to say is that no matter how dark it appears right now there is always hope that the right doctor is the one you will see next and that that person will figure out most if not all of what is wrong and that the treatment will work and give you your life back, if not exactly the same as before you got sick then at least one you can accept and be happy with. Please do not allow yourself to become mired in all the worst case senerios you will find if you research without anyone knowing what is wrong. Make the appointment to see the specialists in London. Make arrangements to get there and insist you be seen as quickly as possible, explaining how bad your situation has become. See the neurologist and see what is said there and move on from there. Hope is always available because darn it all doctors are not bloody Gods. They also make mistakes. So never allow yourself to give up and worry yourself sicker. Worrying is pointless and allowing this to stress you out will only make you sicker. What you need right now is energy to fight.

BTW I got really angry before finally being dxed, I basically ripped the head off of anyone who tried to say maybe it was all in my head or if I only did this I would be better. What I especially hated were people who said I was feeling like I was because I was fat and lazy. I have never been lazy, I always pulled my weight and that of anyone else who couldn't pull their own right up until I got so bad that I wanted to die. Yes, things got bad enough, especially the pain, that I wanted to die and yet my intellect wouldn't stand for suicide because my mind still worked even if my body was worse than useless. So when people implied I was imagining my illness, making it up, or that if I just did more I would get better I went into a verbal rage. If I could have throttled them I probably would have. My poor husband had to watch me fall apart, which I think was harder than it was for me to experience it first hand. When I gave in to my own fears it terrified him so consider those who love you and are watching this happen, if you allow fear to rule you how will they feel? What will it do to them? Ask yourself those questions if you find that nothing else helps you let go of your fears and fight this thing. Everyone matters to someone, and you have a twin which means you matter very much to her.

Sorry to ramble, I am having trouble expressing what I have been trying to say as clearly and concisely as I would like.

I want to thank each and everyone of you for responding. I DO appreciate it VERY much. It is so hard for me. I do agree that if I actually knew what is wrong it will go a long way to helping me cope. Its the not knowing. And yes, the internet is a scary medium!!! I just feel so ill, thats all and all I am being given at present is painkillers which dont work and I am on a very high dose.
Again I woke with the awful buzzing in my head, all the left side of my head. I have felt it has been a result of doing FAR too much. The buzzing is always worse when I do too much.
College is proving too stressful with a tutor from HELL.
I also feel that a pleasant occupation and pleasant folk around would go a long way too. But of the latter virtually no one calls and I dont feel 'love' anywhere.
My twin, I find, at times very worrying for she is constantly ringing and very demanding and coming up with wild ideas like buying an eight berth caravan in Devon!!! We dont KNOW eight people between us,I am in a diff country to DEVON and she hopes to be too in the not too distant future..
I am always having to get her to think clearly and stay on track with her life. I find her actually 'sickeningly' worrying.
I just want to do my photography, but all this health stuff gets in the way.
I actually have no regime, its all contantly health, health health and keeping one step ahead of the pose.
I have health crisis most days, if its not the severe pain with gum disease, to having to go to be measured for special shoes (I have deformed feet! Ah, did I tell you that!!!), to traveling to have blood tests. Its just goes on and on and on.
Family, a very large one do nothing and never visit, ever, or hardly ever. And they do nothing of a practical nature.
Oh, at 6am I am moaning already.
I wake in agony and with profound depression. I DO know the depression eases off a bit as the morning deepens.
I feel crape every morning and have to 'reinvent' the thought processes as the hours pass, by mid afternoon, I sometimes have it right!!!
Sorry for moaning.
I spent the weekend shifting furniture and hundreds of potted plants and all my paintings, again hundreds out of the way of all the windows as the workmen are coming to hack away around all the windows to put new ones in. I live in social housing so have no choice and its like the artic here anyway with the rattling of everythibng when the wind blows.
It doesnt help that they bought windows too big and thus the hacking AND they wont be compensating me for the damage nor do any repainting of the walls I painted over the past two years.
I have seen the other apartments in mid-work, it has looked like bomb sites, next few days will not be pleasant.
Dog has gone to the doggie hotel as I was worried she'd freak.
I'll be the one freaking!
I am sorry, I am sure I will be more cheerful when this 'blip' is over, AND I get some idea of what may be happening.
Thanks again, and I rEALLY DO appreciate it very much.
xxann