Posted 18 November 2009 - 01:31 PM
Anyways, the receptionist called me back (because I was bugging her about giving me the results so she wanted to talk to my rheumatologist first to make sure she understood the tests enough to talk to me), and mentioned that the speckled coupled with my dry mouth was suggestive of Sjogren's. Which supports my lip biopsy results (that the rheumatologist was just copied on, so I don't know if he's seen them yet or not), that were positive for Sjogren's.
So now I've left another message asking her to find out from him whether he thinks based on my previous bloodwork and history of symptoms whether CREST is now out of the diagnostic picture, or whether it's still a possibility with the Sjogren's. It may be that I'm not dealing with scleroderma after all, but just Sjogren's (which in itself can be a pain, but seems to have less serious symptoms than the CREST does).
Anyways, I'll keep you posted.
Posted 18 November 2009 - 03:36 PM
I have CREST and Sjogren's, so you can have both. I think it is a good question for your rheumatologist to see if he thinks you also have CREST.
Posted 19 November 2009 - 03:20 AM
Barbara aka relicmom1
Posted 19 November 2009 - 06:11 AM
I am glad you now have at least one diagnosis to explain some of your symptoms. Do let us know what the rheumatologist says about the limited scleroderma.
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Posted 19 November 2009 - 09:53 AM
Congratulations on getting Sjogren's diagnosed! I know what a long haul it can be to get a diagnosis, and that is a good time to take a breather and absorb what you can about the illness for a spell. We also serve people with Sjogren's here, so if that's all you ever develop, you'll still fit right in.
As it happens, I also have Sjogren's, which was diagnosed before scleroderma. There's a fairly good collection of us around here, because about 20% of scleroderma patients also have Sjogren's, or significant symptoms of Sjogren's, to the point where it's even part of the symptom list for systemic sclerosis. And since most of us are here primarily because of scleroderma in the first place, you aren't going to find too many of us who singularly have Sjogren's.
Your doctor won't be able to say for certain that you could never develop scleroderma. In fact, having any autoimmune disease increases your risk for developing another autoimmune disease, of which scleroderma is one of a hundred or so possibilities. I know it would be easier, psychologically, if we all knew in advance exactly what we were going to be getting in the future. We could certainly prepare for it much better in so many ways, but then again, that would probably take half of the fun and excitement out of life, wouldn't it?
I think the best you can do is first settle in with the whole Sjogren's idea. Then decide to always stay on top of any new symptoms. Reassure yourself with the line of "Don't trouble trouble until trouble troubles you" which sounds trite until you've repeated it a thousand times and finally really believe it. Do everything possible to keep your stress level down and your laughter level up. All the coping skills you develop to use for Sjogren's can just as easily be deployed to help with any other stress you might encounter in life.
We'll be here for you, come what may.
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Posted 19 November 2009 - 11:09 AM
Posted 19 November 2009 - 01:25 PM
I agree, it's good to know you have one diagnosis so you know what you are dealing with as far as some of your symptoms...and at least feel like you have a handle on what is going on. Just be sure to stay on top of any other symptoms....if need be.