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amberjolie

Saw the rheumatologist today

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He didn't really have anything to say about anything. Just said he could prescribe plaquenil if I wanted, for my finger stiffness, but I figured they're not that bad yet, so I don't need meds for it yet. I asked if it were possible to have just Sjogren's and not CREST, and he said that connective tissue disorders often overlap in symptoms, and I don't really have any specific antibodies to be able to say anything specific (he intimated that I was a bit of an oddball in terms of only having nucleolar ANA with nothing else to show for it :P ).

 

He didn't seem to think I'd come out as having Sjogren's, because I can still spit and my eyes don't feel gritty.

 

But he sent me for another set of blood tests to see if anything new shows up, and said that since I'm waiting to hear the results of the lip biopsy, that we might as well wait and see if any more info comes to light.

 

So he really couldn't answer my question about whether I could just have Sjogren's or both Sjogren's and CREST.

 

What's really odd is I mentioned that one pupil is often slightly larger than the other (which normally is not a good thing, right?), but he really didn't say anything about it other than he didn't know why that would be.

 

Oh well. I guess I'll see what happens with the lip biopsy results and blood test results.

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Hi Amberjolie,

 

Oh, it's such a wait, isn't it? And so is trying to brace ourselves for the results. I try to calm myself for all the medical tests and results by figuring, no matter what they find or don't find, it is all Good News.

 

After all, if the tests show nothing wrong, that's great news! If the tests do show something wrong, that's great news too, at least we have discovered the reasons for certain symptoms and now possibly have a treatment at hand.

 

Then, since it is all Good News, no matter what, then I don't have to worry over what the results are, since for absolutely certain, no matter what, it will be Good News.

 

I know that sounds just beyond dorky, but my husband has also found the same approach very helpful as we have slogged through years of testing with him, as well. So, for example, if his lung function is up, that's fabulous; if it's down, that's terrific, at least the test validated his experience with increased shortness of breath. And so on and so forth.

 

So, while you are waiting on all the results, we'll be waiting too, eager to hear whatever the good news is! Here's some While You're Waiting Flowers from those of us who have been there, done that: :flowers:


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

The most important thing in the world to know about scleroderma is sclero.org.

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Hello Amberjolie

 

I'm with Shelley...it's all good! :emoticons-yes: Please keep us informed so we can share in the good news with you.

 

Take care.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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I love Shelley's way of handling test results! Certainly eliminates the anxiety! Thanks for sharing that. I feel like I've just gained a new tool in dealing with all of this sclero-schmero.

 

Sharon T


Sharon T.

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Thanks everyone for your replies!

 

I'm starting to wonder now if the finger ulcers were a fluke (not getting them this year, at least not yet), and if all my other "symptoms" are either just psychosomatic because I'm thinking about CREST symptoms, or whether they're just unrelated to each other and are due to other things. One thing's for sure...I'm getting sick of all the doctors appointments!

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