View Full Version : Saw My High-Profile Doctors

05-26-2011, 05:12 PM
Well I went to see the experts in St. Louis in hopes of figuring out what exactly this is that I have. There's absolutely no doubt I'm sick and there's no doubt I'm getting worse. I've had real trouble getting up in the morning for a long time. And when I say trouble, I mean I get physically sick and am almost can't walk. I have to wake up when my body says it's okay and I still have rest for an hour or more before I can do anything like shower or run errands. I explain this because I had to start the day at around 7:00am to get to the doctors so I was foggy, in pain and doing all I could not to throw up for the appointment.

But they were very businesslike and asked a lot of questions. I still don't feel like we covered enough but I think there will be more than one appointment. Apparently they thought there was something wrong with my hands which is interesting because that's the one appendege no one ever addressed before. They did x-rays of my hands and I'll have the standard blood tests. They talked about Lupus and RA but certainly didn't commit to anything. One doctor talked about a couple of meds I haven't tried. We all know the prednisone is not a good long-term choice but without it I can't breath.

It's been such a difficult month. I've gone back to the breathing problems. I have a hard time even taking a drink because the fluid in my mouth seems to get stuck and then I can't breath. It really stinks! And the flares have been so much more frequent!! The pain is just unexplainable. It's like someone took a sledgehammer and just went crazy up and down my legs and then took a few minutes to go crazy on my hips. My hair is coming out by the hand fulls. I can tell because every morning I comb out my hair and have to throw out a hand full. And I'm sleeping 14-16 hours a day. Once in a while I'm blessed and have a good day so I can pick up the house and maybe grab some groceries. I wish with all my heart that I had another person who could drive!

Right now I'm a bit concerned about the pain behind my knees. I worry about blood clots but I know that my blood is thin enough thanks to the blood thinners. If it goes on much longer, I will talk with my doctor. Right now, aside from the pain behind my knees, everything else is old news.

Thanks for listening. I'll let you know if my new group of doctors come up with anything new. Hope all is going well with you guys. Take good care.

05-26-2011, 05:19 PM
Wow, this sounds so terrible for you and you have my empathy. Will the doctors be getting back to you with test results or do you have to wait until your next appointment? I sincerely hope they are able to give you some relief, and soon!

05-26-2011, 05:23 PM
You have my empathy also, especially when it comes to swallowing and breathing

hugs and good thoughts headed your way

05-26-2011, 06:07 PM
Hi Serand,

Do you think they are leaning in any sort of direction as far their opinion of what's going on with you? My mother also has Lupus, and she has breathing problems that sound much like yours. She's been in the hospital once for it, but she's also 75 years old, and we're not sure if her breathing problems are from Lupus, or just a matter of age. One doctor wanted to pin this problem on the fact that she smoked for a couple of years back when she was in high school-that was a bunch of years ago, and that opinion is a bunch of BS in my opinion.

She takes prednisone and plaq to keep her symptoms in check. I hope you get some answers soon, and with that, some relief.


05-26-2011, 08:51 PM
Hi Serand,
I hope that those experts are able to help you.
I also have horrible pain behind my knees. Does your pain extend down into your calves and up into your hamstrings? Mine does. My calf muscles feel constantly hard, contracted and sore and the hamstring muscles often spasm, sometimes bringing me to the floor. I ask the docs about it, but all they say is "There is nothing wrong with your muscles."
I'll be very interested to hear about what your experts have to say about it.
Keep us informed.

05-26-2011, 11:12 PM
sorry to hear life is so hard at present.
it was the pain in my legs that eventually led me to my rhuemy. (my diagnosis)

05-27-2011, 03:56 PM
Thank you so much for your kind remarks! I love the support I receive on this site. I'll keep you posted on their response. God bless you guys!

05-28-2011, 05:02 AM
Hi Susan,

I'm really so sorry for the pain your going through and i sympathize with you on such a great deal.

I really do hope they let you know soon what all this is your going through and the tiredness must be so terrible besides, i hope to hear the outcome Susan like other member's also and what answers they give you through your suffering (fingers crossed for you mate).

((Hugs & kisses Terry)) xxxx