Dislocations so far today: none today--woohoo!
Subluxations so far today: Right shoulder a couple of times, right scapula once
Meds: Ketoprofen-- 1 with breakfast for now
Major complaint: My right hand is pretty much a painful, swollen, useless lump until around 8PM when I can start to use it.
Awesome news! The news is not that bad! After expecting to be given a definite diagnosis of either Lupus or Scleroderma (with a tiny chance it was Rheumatoid Arthritis), we got to Tufts and were told that what's going on with my hands looks like it's not any of those! Holy crap!
Okay to back up: We picked up B on Wednesday and planned on taking the 6:15AM bus into Boston. M and I slept like hell waiting for the alarm to go off. I woke up around 3AM and stayed that way until we got up around 5AM. We got to the bus station early (because I'm a paranoid idiot and was freaking out that we might miss the bus). In fact we got there so early that the woman behind the counter gave us a weird look when we sat down in the lobby and said, "Um, the bus is loading." It was going where we were, so we got on. It was the 5:45 bus that happened to be a little late. So we got to Tufts SUPER early--so early that when I went to register, the office wasn't even going to open for another 30 minutes!
So we waited, and I registered, and we went to Dr. G's office, and we waited, and B made us laugh and M held my hand and that really helped. I got called in and I thought I was going to be sick with nerves, wondering which disease it was going to be--how M and I would cope.
I saw the doctor's assistant first who told me to put on a gown. She asked me to go over my symptoms which I did as well has gave her my 3 page print out that listed my previous doctors' contact info, symptom timeline, current symptoms, family history, and non-related health problems (like the EDS). She have me an EXTREMELY thorough exam of my skin--the point where the gown was sort of a joke.
At least I felt like I had gotten my point across when she asked, "Can you take your bra off for me?"
And I raised up my big red balloon hand and said, "Uh, no. No, I can't."
She said that besides my swollen hand, I had perfect skin--which is nice to hear, but she seemed to confirm our fears and Dr. E's theory when after the exam she said, "Well, I would say that have some sort of Rheumatic Disease because your ANA is extremely high." But said that Dr. G would be in shortly.
That was a terrible wait. Luckily the room was full of machines that shoot lasers and big WARNING signs so I spent some time offering to laser M if she'd like while I sat there naked with my gown-blanket.
Dr. G finally came in and went straight for the hand, which I was thankful for. She remarked how cold it was and that the temperature change started right at the wrist. We went over all my symptoms again and then she said, "I don't think this is Scleroderma. Nothing about this screams Scleroderma." I must have looked shocked because she said, "That's a good thing!" Oh I know! That's a VERY good thing!
She said, "I think this is Reflex Sympathetic Dystrophy," and I didn't know what the hell that was but I didn't care because it wasn't Lupus or Scleroderma and from what it sounded like I wasn't dying! She explained it a little to me, mainly that it is from nerve damage in the shoulder and would effect my hand in exactly the way it is.
M piped up, "That makes so much sense--You are always getting nerve pain in that arm."
Dr. G's face got that PING! expression and wanted to know how long I'd had nerve pain (since I was 17, so 6 years). She asked if I had had trauma to that arm, and I explained that I subluxate that shoulder 4 to 5 times a day, and I subluxed it to show her--which completely grossed her out! She wasn't even touching the shoulder when I did it, which is what I normally have people do when I'm trying to explain my screwed-up-ness. But she had earlier asked me what things I could do that normal people can't and when I showed her my stiff, but still abnormally bendy left hand she tweaked out pretty bad yelling, "Oh! Don't!"
There was also a moment that I have had before with doctors when Dr. G stated that the complications of the EDS were really more of an annoyance than a hindrance to my daily life, right? NO. I explained to her my daily dislocations/subluxations, the falls, the wheelchair, the stenosis, the unexplainable spinal fusion--and she seemed to get it then, which I appreciated. In fact, I don't think I've ever been openly pitied by a doctor more. It wasn't a good feeling, but it was better than being told I was making it all up.
She told me, "Oh, I'm so sorry! That's just so terrible! You have to deal with all that! And now with the hand? Oh! That's horrible! At least you're very pretty--God was good to you in that one regard."
I'm not sure how you respond to something like that. I think I smiled and said thank you. At least it was nice to see a doctor who openly genuinely cared about me.
Since RSD is not her area, Dr. G referred me to another Rheumy at Tufts and I made an appointment with him, but that's not until the end of May, so it's back to more waiting--but at least this time we don't think that it's something lethal!
After we got home, I did some looking up online about RSD and my symptoms do seem to match: Red/blue/purple swollen extremity, cold to touch, pain, shiny skin. Again, this condition isn't curable, but it's at least a condition we can learn to live with, much like the EDS.
Dr G's advice in the meantime is to keep my right hand warm. I called Dr. E (my first Rheumy) for his advice on treatment/medication since we're treating something else entirely now but we won't be in until Monday.
PS: My Disability claim has passed the first hurdle and I've been assigned a new case worker who sounds much nicer on the phone. Now I just have to fill out my weight in forms. Again.
Hand stiffness using middle finger has measure
Time: 10:38 PM
Can touch forearm? over an inch off
Angle of extension of the center joint of finger: 30º
Angle of extension of the last joint of finger: 100º OW!
Can touch forearm? Not even funny how much this isn't a possibility
Angle of extension of the center joint of finger: 20º
Angle of extension of the last joint of finger: 70º