View Full Version : Update on rheumy visits

09-21-2012, 06:17 AM
Well I finally saw the rheumatologist, actually 2 different ones! The first one I went to last week. She kept cutting me off mid-sentence when I was going over my symptoms, didn't listen to me, and kept saying that I don't seem to have RA. Well no kidding, I wasn't there for RA. She told me I need to exercise and that "sitting on the couch won't help" with a look in her face that was not nice at all. She said maybe fibro but she didn't think it was. I tried to explain to her that I love to exercise and that I hate that I can't because of the pain and fatigue, and basically my muscles and joints just give out on me after a simple workout. She said, well just do a little yoga. I told her I had to quit doing yoga because it hurts so bad. That I used to do rock climbing and circuit training, yoga, etc, etc. I know that exercise is good, but right now my body is getting worse when I do anything more than a simple walk. She just rolled her eyes and said she would do labs but that I was probably fine. I was sooooo pissed and close to tears. They did take 12 vials of blood and a urine sample and sent me on my way. At the front desk they said they could see me again in 6 months!! I was like WHAT?!? So they went and talked to the dr and said they ok 6 weeks. I asked if I could get a copy of my labs sent to me and they said that it costs a dollar per page and has to be paid up front. I was like, whatever. I left and went and requested my labs from the lab to be sent to my email.

Luckily I had made an appointment with another rheumy to get a second opinion. I went to him yesterday and it was a night and day difference. He came in and introduced himself, sat down with a pen and paper and said tell me what is going on. He said he wanted to hear from my mouth what was going on and how I feel, and I had also brought in a list of my symptoms and gave it to him. They he asked me question, did a quick exam, and said he doesn't want to repeat labs until he finds out what labs I've had done. He seemed to ask a lot of questions related to lupus symptoms and of course I can say yes to most of them. So they are going to request my blood work from the lab as well. He wants me to come back in 2 weeks to go over the lab work and he said it's all a process. We have to think of what it could be and then eliminate what it isn't and see what is going on with all the peices of the puzzle. He gave me lyrica and said it should help with the nerve pain and help me be able to sleep better without pain waking me up.

I am sooooo glad I kept that second appt, it was so nice to have him listen to me and actually hear me. He even noticed my eyelids are discolored which has me worried about dermatomyositis. So hopefully he will be able to figure this all out. It's been a week since I had labs drawn, so I'm going to call today and see if they have my results in at the first Dr. and let them know I am not coming back.

09-21-2012, 08:59 AM
It's amazing the difference between doctors sometimes. I had a similar experience with rheumatologists-- saw a crappy one on a Thursday who pretty much shrugged at me and said, "I dunno what's wrong with you." And then the following Monday, I saw the only other rheumatologist in town, who took a careful history, did extra research to try to come up with ideas, and generally seemed to give a hoot.

I'm glad you found a rheumatologist who is worth his salt!

09-21-2012, 04:44 PM
That is so familiar! I've seen three rheumys.
The first one was supposed to be one of the top ones in SA, Tx. He looked at my lab work and said that the only result that was somewhat high was for Sjogren's, but that was something that is so mild, there is no need to treat it. (I've since found out that SJS is not something to ignore). He also did the come back in six months thing.

Lucky for me, my PCP wasn't happy with his answers. She sent me to another rheumy in SA. I had to wait six months for an appointment, but she was worth it. She looked at the overall lab results and said that while I only tested "mildly positive" to several things, when you add them all up and see the pain that I obviously was in, treatment was needed. She called it Mixed Connective Tissue Disease.

Unfortunately, we've moved to another state soon after I began treatment. My current rheumy is one like you saw, who thinks that all I need to do is exercise. At least she renews my Plaquenil prescriptions, but that's all she's good for.
We'll be moving back to SA when my hubby graduates, so I'm just taking my meds and biding my time.

It sounds like you have one rheumy who is a keeper. Let us know what he tells you.

09-21-2012, 10:27 PM
Sad that most of us go through this. They think they are god and live and die. Y the bloodwork. It is as if half don't have ears and more than half think we don't know anything