1st Appointment
I had my first appointment yesterday with the Chief Director of Rheumotology at John's Hopkins. I was expecting the appointment to take some time and to have a lot of questions, but I had filled out the 15 page form they sent me (how much more could they possibly need to know) and I wrote 6 pages more information that I thought would be important to my doctors. I wanted to make sure that this appointment went smoothly and quickly. Instead it took 2 1/2 hours.
I was going there to find out if I had Lupus or not and if yes what kind, if not what else I might have. I got weighed and my bones felt and I had to bend over with a tape measure on my back. I found out that I am hyper-flexable which apparently is a bad thing. I never even thought anything of it before. The knuckles of my fingers can bend backwards in a way that normal peoples can't and the doctor said that it might be the cause of my hand pain. Some how I am over flexing my fingers and it is causing them to hurt. This is possible since I know that I sleep with them in a bent position that now I know is wrong.
I really can't remember all that happened in the office yesterday, I have a bad memory for things like that but here are some of the highlights:
- Jemal told the doctor that I have a bald spot in the back of my head, but they couldn't find it so Jemal is now telling me that he might have imagined it, he hadn't told me before the appointment, now I am very worried. I have been worried about this for the last 2 years, my hair falls out a lot. In the shower and when I comb it. In the office it didn't do what it normally does so I couldn't show her that it comes out in clumps. I guess I shouldn't have brushed it before I went.
- I lost about 18 pounds since I got out of the hospital last month, I don't know if that is a good thing or not. I haven't really changed what I eat or how much I eat. I haven't noticed a difference in anything I do. But I am Thinner!
- The doctor suggested therapy for my hands because I need to learn how to use them without hyper-extending them. I don't know if I will do the therapy or not but she hasn't actually ordered it yet. I don't know that someone can actually teach me how to use my hands.
- She also suggested aqua therapy because of the fatigue if they don't find anything else wrong with me. She said that it would gradually get me back into physical activity and not involve too much stress, what she doesn't realize is that getting in my car and going to therapy is too much stress right now.
- I am getting lots of blood work done. I still have blood work from my PCP to get done and she is sending me more to do, so I am going to wait until that gets here and do them all at the same time. I hate needles anyway to have them stick me less I will do. I am hoping that these test will help them come to some kind of conclusion about what is wrong with me, so for that I am willing to do the tests.
- I am getting x-rays on my hips, wrists and shoulders, these are all of the places that I have joint pain. I guess the x-rays will show them what kind of pain it is. My shoulders have Bone spurs but I don't think that showed up on my x-ray before and that is why I had to get the MRI.
- I didn't know I had pain in my hips until she did the exam and turned my leg outward and I felt pain there. I guess I do have something going on there and didn't know it. Only on the right side though.
- The doctor was very through and asked a lot of questions, she even read all of the papers that I brought to her and asked me questions about those papers. I was pretty surprised by that, I kind of figured that it would just go in my file and I would have to remember it all anyway. They took measurements and all of the usual tests and then some
- I most likely don't have arthritis. I may have had a "spell" of arthritis for awhile but my fingers bend too easily for me to have arthritis now. Not too long ago though they used to get stuck in position and they would hurt very badly.
- They asked me what my biggest problem was and my answer to them was the fatigue and being sick all of the time. I never seem to heal from something before I get sick with something else. That keeps me in bed a lot and makes me very tired. I don't know what they thought of that but they seemed to have some kind of a plan to fix it I guess.
- At the end I told the doctor that I was there because my PCP said that I had lupus only that it didn't have a name and the doctor said that she didn't like labeling people so she didn't give me a diagnosis or even a possible one. She did say that she is not looking at that for me yet, and that she is going to run some tests and things first to see what we are looking at. I want a label! I want to know!
So, that is as much as I can remember about my appointment maybe Jemal will remember some more stuff for me and he can comment on it but that is all that I have. I don't have a return appointment scheduled but I think I will call after the blood tests are done and the x-rays and see if they want me back again. Maybe then we will see if they are any closer to a diagnosis for me, sadly that could be another month from now at least. But it is the best doctor in the state if not the country to see about this. I may not like how it is going because I am tired of waiting but I know when it is done I will finally have the right diagnosis. I am really hoping this time. Heck, it might end up being something that doesn't have a name and they can name it after me!
As always I will keep everyone informed of my ongoing medical problems but i am trying not to write about them so much. I am trying to raise the depression level of this site just a little. Now I am trying to write some little things about organization and I have a few other ideas in mind as well, I just have to get around to doing them.