What do I ask this time?
I wasn't sure exactly where to post this...It's about symptoms sort of so I thought maybe this would be an ok spot?
On May 4th coming up will be my second appointment with my new Rheumatologist. The first visit I had with him was rather quick I guess, he examined my entire body looking for swelling and any other abnormalties, and we did a lot of talking and he drew me a picture explaining that yes I do have an autoimmune disease (not sure which out of the three they have roped in, SLE, RA or Sjogrens) and how it worked and what was happening to my body just to help make it more clear for me. I already new because of my first specialist but this man was very nice so I just listened again and now wish I got to keep that picture.
He drew blood from me at my last appointment which was on March 8th, to check on the abnormal antibodies and anything else that may have come up.
Now, what should I ask him this time around? They have been trying to figure out what is exactly wrong with me for over a year now, is there any way it can be sped up, or something? I mean, what if I want to apply for disability, how can I do that if I don't have a clear cut diagnosis yet? It's getting harder for me to keep a job because I always feel so sick every single day and the added stress I guess from worrying and everything else takes me down even further. I DO want to work, I DO want a career I just don't know how to juggle that, its so hard getting out of of bed as it is and I'm so young for pete's sake...23, I'm just a kid.
I have a book where I keep lists of my symptoms and anything else that comes up, and this is what I have:
-Positive for ANA, RF, and other ones I cannot remember the names of
-Morning stiffness lasting an hour or more in my hands
-Chronic pain in my hands/knuckles
-Chronic pain in my wrists and elbows, swelling/cracking/locking
-Extreme pain in both hips, worse on the left
-Chronic pain, swelling, cracking/locking/stiffness in both knees, left being worse
-Cracking/locking stiff/swollen ankles
-Lack of appetite(Unless on pred, then its increased, without the pred I'm rarely hungry)
-Low grade fever all the time, 99 or higher, never 98.6
-Sore, stiff, aching, muscles
-Unexplained, constant bruising on lower legs, upper thighs, hands and arms
-Puffy, swollen veins
-Difficulty grabbing/gripping with my hands (I ALWAYS drop things and I can't hold onto small things like buttons, pins, etc)
-Rashes on my body, mostly on my face, chest, arms, back and hands
-I can't gain weight, and I can't keep weight on either even now that I eat like a pig every day
-Dizziness, and I also faint quite often for no reason and out of no where, I just get black vision and go down
-Hives on my back
-Very sensitive to the sun, even if its not sunny I blotch immediately
-There was a period of time when I was younger where I would lose a lot of hair, it would come out in chunks when I brushed/washed it, but for the last couple of years that seems to have stopped.
My rheum knows most of this already but I have added new things now.
Also, back in 2002 (If I did the math right) when I was 16 years old I got really sick out of no where and nearly died from my white blood cells being wiped out. I don't know what happened because my mother (she's very mentally ill) never told me what was wrong and wouldn't let me find out so I STILL don't know. Is there any way that my doctor could go back and pull those medical records and take a look at them? I find that part of my history to be VERY important when it comes to all this now. I lived in Alberta at the time and I have been back in BC for 8 years now.
I can't remember if there was high protein in my urine test, I'll have to ask again. Are you allowed to actually look at your own file and get copies of it? Are there other blood tests or any type of tests I should ask for? Is there anything I am missing?
This is really hard for me because I am completely alone in this, no guidance, and very little support. The only one that is really here for me all the time is my best friend Danny but he unfortunately lives too far away from me right now, in Montreal, so he can only do so much from a distance. My parents aren't there and my siblings don't understand and are too busy with their own healthy lives.
I have books and I do research on the internet and try my best to keep track of my symptoms and any changes or anything at all really, but as soon as I get in that office with the doctor I get so nervous I shut down and rarely get to ask what I originally wanted to.
I wish I could just be diagnosed...With something, and if it's all three of them then fine, just please tell me already.