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Biomarker for Diffuse Scleroderma skin has been discovered!


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Saw the new rheumatologist


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#1 amberjolie

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Posted 24 May 2012 - 03:58 PM

Ok, finally saw a rheumatologist who specializes in scleroderma. I think I'm going to like her. Essentially we just went over all my symptoms and so on, but she wants to do an ultrasound on my hands and feet, and send me for another echocardiogram since it's been awhile (although she didn't seem to think there was a concern).

She said for the methotrexate, we'll give it one more month, and then she'll see me again and we'll see what we do at that point.

When she looked at the bloodwork, I mentioned that my ANA is always 1:640 and nucleolar, but everything else is always negative. She said, oh, you're one of those. The way she said it seems like she understands some people are sero-negative.

And she's involved in scleroderma research, and the local scleroderma group, so she's very involved.

One last thing - I asked her if she thought I had diffuse or limited, and she said that even though my chest has some tightness to it, the fact that my mouth is involved makes her think it's the limited form.

So all in all, no magic-wand healing (which would have been nice :) ), but I get a good vibe from her.

#2 Shelley Ensz

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Posted 24 May 2012 - 06:43 PM

Hi Amberjolie,

I'm glad you finally got to see a scleroderma expert, and also that you got good vibes from her.

:emoticons-group-hug:
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.

#3 debonair susie

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Posted 25 May 2012 - 09:30 AM

Hi amberjolie,

I am SO glad that you have gotten connected with a Scleroderma Specialist with whom you feel good about; I especially like the good vibes you get from her :emoticons-line-dance: ! Because of her research background, I am hopeful you will receive good care. Now you have an incentive to begin keeping a notebook readily available to jot down any questions you might have (before your next visit)!
Special Hugs,

Susie Kraft
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#4 Joelf

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Posted 25 May 2012 - 01:06 PM

Hi Amberjolie,

That's very good news that you've had such a positive appointment with your Scleroderma Specialist and I do think that it's important that you get good vibes from her and can feel happy and confident about her diagnosis and treatment.

Kind regards,

Jo Frowde
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#5 Snowbird

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Posted 25 May 2012 - 02:46 PM

Hi Amberjolie

I'm so glad you found a doctor you can connect with and like. Where is she? Mine happens to be in London...wonder if we are seeing the same specialist?
Sending good wishes your way!

#6 amberjolie

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Posted 25 May 2012 - 03:24 PM

Hi Snowbird,

I was originally referred to the one in London, but it's a bit far for me, and the referring doctor found one in Hamilton that he didn't realize was there.