Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group need a new rheumy....

I had an appointment with a rheumy last week.
I was really looking forward to finding out what's wrong with me, and starting on some treatment that would help.
Things started out bad and went downhill.
The exam by the physician's assistant was very rough and painful....and then I had to go through the same exam with the rheumy. My joints were all forced to move, 'way beyond the level of comfort. My fingers, toes, wrists, ankles, elbows,knees, hips and shoulders were crunched and twisted and bent backward.
My question time was limited to any comments I wanted to make within the first part of the exam, and after that I was told not to "interrupt."
I ended up in tears, out of pain and frustration.
They told me that I have "inflammatory arthritis, stenosis and osteoporosis," and if I didn't follow their treatment, I'd be in a nursing home in 10 years with a broken hip...

I wanted a doctor that I could communicate with. These people were impossible. They treated me like a naughty child just because I wanted explanations.

Sooooo....I'm taking Fosamax and NSAID's and calcium w/ D.
IF I go for the next appointment, they want to start me on immune suppressants.

I am very discouraged....
It's been almost a week, and I still have more pain and swelling than before the exam.

i would get a new rheumy too. my rheumy and my GP and myself all communicate together. so i can get the proper care needed. if i have a blackout or a sleepattack both doctors are know about it because my wife calls and tells my GP who calls and tells my rheumy. so they both decided to send me to a neuro for my sleeping and tremor problems they think its parkinsons desease and i think so too but that is up to the neuro. it just could be my meds are casing it but i doubt it. call around or ask your GP to refer you to the best rheumy around. i was lucky my rheumy is the best in the state on AS. both here and in germany where he comes from....I hope this advice is helpful to you. my GP first sent me to a spine surgeon who showewd me the xrays he had taken and what i brought even the mri's i brought with me and he showed me where i was fusing and what was already fused and he dx'd me with osteoporosis as well as confirming my having AS. he sent all his records to my GP who refered me to my rheumy..........oak

Hi BlueFrog,
I'm sorry to hear that they put you through so much pain and frustration while giving you your examination. If they even suspected that you have inflammatory arthritis, stenosis and osteoporosis before hand, they should have never been so rough on you because bones fracture, nerves get pinched, and joints can become inflamed. It makes you wonder the way some doctors think. I think that it is more important to get a measurement based on your own abilities, not having them force your joints to get the measurements. Besides, we don't go through life having people twist and pull on our body parts, so why they think that method is necessary is beyond me. They are supposed to listen to their patients, and they should realize that patients have to wait weeks or months to get a brief moment to speak to them. Everything we tell them is just as important as what they tell us, or else we wouldn't be able to get any proper treatment. This sounds a lot like the Neurologist I saw in January, when he was shutting me out. If you can't talk to him then there's no use going to see him.

I hope that you could get a referral to see a new rheumatologist soon.

Just my opinion,
Take Care,
James.

Wow, are you actually going back? There are plenty of Rheumys out there. If you let us know where you are from maybe someone could recommend one for you. Don't forget, you are paying them for their services. You need a doc you feel you can talk to and are comfortable with.
Cindy

Thank you so much for your responses.
The only reason I would consider going back there is that I have another appointment scheduled in 3 weeks...which would be much sooner than I could get in to see anyone else.
However, the more I think about it, the more anxious and angry I become, so I guess the waiting would be worth it...
just to find someone who will help me without beating me up, and with whom I can communicate.
I need to be part of the treatment...not just a body that they dump pills into.

From the reading I've done, AS is still my first guess, and lupus is my second. (I hadn't considered lupus before, but the way I've felt since the exam makes me consider that, too.)

Just a thought, why don't you get on the books with another Rheumy a while, don't wait until after this appointment in 3 weeks. That way your wait will be shorter and if you change you mind you can always call and cancel it.
Cindy

Your rheumatologist sounds like my cardiologist. I got the echocardiograph and holter test done because it would have delayed things to go to another doctor before these were done. But once I had those results, I transferred to another doctor. If you don't feel you can communicate and feel confident in your doctor's recommendations, then switch to someone who has your interests more at heart.

Hi there. Well, that just sounds HORRIBLE. I'm for you finding another doc ASAP as well. Don't wait until after the next appointment, just start looking. You have the right to be listened to and to have a doctor who's examination doesn't cause more pain than you had to start with.

Hugs,

Hi Bluefrog,

Did they do Xrays? Or have had a bone fracture? You have to have had one of these to be diagnosed with osteoporosis.

Have you had a CT or MRI for the "stenosis" diagnosis? Have to have had one of those tests for the stenosis diagnosis.

What treatments were they offering, and was there a cost involved?

If you're uncomfortble with this office and their lack of communication, don't go back. But, it sounds like you had a very thorough exam, unforunately it was painful.

Communication is key in any relationship... including the one with your doctor. If he/she is not willing to allow open communication I would seek a new doctor.

Tim