Posted 10 August 2010 - 01:02 PM
He tells me that I am a sick person and need to remain treatment compliant or risk worsening my condition (you mean the condition you insist I don't have?). He believes I may have degenerative disc disease and I need a lumber spinal x-ray. He also orders a lupus panel (why lupus? I have no idea) and clean catch urinalysis. The latter was ordered to results of a previous urinalysis from May of this year. He tells me that I need to be monitored more closely than I have been. I was also ordered PFT's and a Barium Swallow Test. All this for someone with no diagnosis. Oh wait, he agrees I have Raynaud's and that is it...lol.
He wants me back there in about 10 weeks. He is a much older doctor and I am sure that is where a lot of his beliefs come from. The best news about all this is that it is a temporary situation and my symptoms are being treated! My family and I plan to move out of our current state next summer so it will be a whole new doctor then.
Thanks for listening!
Posted 10 August 2010 - 02:23 PM
Hi Debo ,
For what it's worth, initially, Gareth HAD the positive blood work along with the esophageal dysmotility, restrictive lung issues, chostochondritis (inflammation), loss of vocal cords, 20 pound weight loss, extreme fatigue, BUT no skin issues. Even though he didn't get the sine scleroderma diagnosis, but the UCTD diagnosis, they started him on Plaquenil. It really doesn't matter as long as they treat your symptoms. Even now, the rheumatologist has added Raynaud's and SICCA to his diagnosis, but still considers it UCTD....not sine scleroderma.
Take care, Everyone.
Posted 10 August 2010 - 03:41 PM
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Posted 10 August 2010 - 08:42 PM
I have the opposite problem to you, I have a rheumatologist who confirms I have Limited Scleroderma (bloods confirm it) but says that all my joint pains, stomach problems and even the swollen side of my face, etc. are not connected to scleroderma because there is no skin involvement in these areas (when he pinches my skin there are still wrinkles)!! Bet your man didn't try that one did he!
Hope you get some good results soon from someone who will truly listen to you - and if all fails get your doctor to pinch you - obviously a tried and tested method of diagnosis!
My very best wishes to you.
Posted 10 August 2010 - 10:05 PM
I can understand your frustration with your rheumatologists attitude regarding needing serological evidence for a diagnosis - clearly he is not right about this. As for his "knowledge" about what was wrong with your grandfather, well!! However, trying to be kind, I do see some positives in his approach. Firstly he seems keen to monitor you more closely - which is never a bad idea. Secondly , I think that it is normal (and responsible) for a rheumatologist to also do a lupus panel to get a fuller picture of what is happening- some people do have both lupus and scleroderma. I was diagnosed with scleroderma four years ago and my rheumatologist still periodically does blood tests to check for lupus antibodies.
On the subject of degenerative disc disease, I was diagnosed as having this last month following an MRI, but I think beyond a certain age it is so common as to be almost normal, and my Ortho was not at all concerned.
Posted 11 August 2010 - 06:15 AM
Posted 11 August 2010 - 11:33 AM
I know it's frustrating to figure out but maybe he's just keeping you on his 'watch list', which is also good, meaning he will deal with symptoms as they arise...who knows?
Posted 11 August 2010 - 04:25 PM
But the best one was the last when I mentioned I got some good information from this site- she shouted "Why are you going there- you don't have scleroderma." - she's been treating me for CREST syndrome.
Usually I don't respond because I'm too taken aback. But I just may ask her about the last one. If she's right, I'm one confused cookie.
Anyway- this site has been a blessing because it has given me enough information to ask the right questions.
Posted 12 August 2010 - 03:08 AM
I guess the good thing is that if we get really concerned about a doctor, we can choose to go elsewhere...lol.
Posted 13 August 2010 - 08:36 AM
Well if blood work is the be all and end of of the diagnostic process then I don't have scleroderma, despite being treated by one of Europe's experts in...well...scleroderma! I have and have always had a negative ANA, even having developed heart involvement.
I admire your patience in dealing with the doctor, I couldn't!
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Posted 13 August 2010 - 09:19 AM