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Biomarker for Diffuse Scleroderma skin has been discovered!


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Calcinosis


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#1 miocean

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Posted 26 February 2013 - 07:29 PM

You may remember my posting that my scleroderma specialist wants me to take part in a study to track the development of calcinosis in scleroderma patients. She has sent me a full set of labs to have done before my next visit in May. It will be interesting to see if there is any change in the 9 years that have passed.

I go weekly to a chiropractor, have for years. In 2003, before scleroderma. I started seeing new one so I had x-rays. I haven't been x-rayed since then due to all the other issues I have had but today had repeat ones. With the technology today they could be looked at immediately. These x-rays go from chin to below the hip bone.

I was allowed to leave my jeans on and just unzip them. I had told her a piece of metal might show up from a star closure that was used in a heart catherization. She had the images on the screen and said "I have never seen anything like this, what do you have in your pockets?" I moved over by the screen and saw these clustery things between my legs. I pulled out my pockets and showed her I had nothing in them. And then it hit me! Calcinosis! That is exactly where I have those lumpy baseballs I sit on. On her x-rays they looked like popcorn clusters.

I have asked her if I can have a copy of the files to give my scleroderma specialist and to try and post a picture of it for ISN and she said yes, so I hope I will be able to get something visual for all to see.

I will keep you posted.

miocean


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#2 Joelf

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Posted 26 February 2013 - 11:35 PM

Hi Miocean,

 

Goodness me, I expect the person doing your xrays thought she was seeing things!! I'm so sorry; they must be very uncomfortable for you to be sitting on them all the time.

 

I'm waiting with bated breath for the photos!!

 

Best wishes,


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#3 Shelley Ensz

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Posted 28 February 2013 - 09:08 PM

Hi Miocean,

 

I am still terribly sorry that you have to sit on calcinosis lumps all the time.  I really can't even imagine what that must be like, it has to be painful and a constant irritation, and for most folks, that would be the maximum bad, .not even able to sit down peacefully.  I really wish I could wave my magic wand :fairy: and make them go away for you.

 

But, since I can't, I would be very interested in seeing those way cool x-rays!

 

! :emoticons-group-hug:


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#4 Amanda Thorpe

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Posted 02 March 2013 - 04:36 PM

Hello Miocean

 

Yeah, can't wait for the x-rays! How do you manage the calcinosis when it comes to sitting and how do you manage the pain as I am assuming it's painful?

 

Take care.


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#5 miocean

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Posted 02 March 2013 - 05:38 PM

I have pillows on top of cushions in the places where I sit in my house. Unfortunately my couch, ordered quickly when I had the scleroderma crisis, is pretty but is not the most comfortable. I have a folded up towel on my beach chair but that is problematic because if I go in the water and sit on it I get it wet and calcinosis should be kept dry. My car has comfortable seats but I sometimes have trouble with other cars. I can't sit in a bathtub anymore, that is very painful. That's okay, after not being able to take showers for almost 6 years due to my catheter I would rather take a shower.

I did have a portable stadium cushion I brought with me places but lost it and have been able to deal without it.

And I think I have a high tolerance for pain.

I see my chiropractor Monday morning to go over the x-rays and hopefully I will have a copy after then.

miocean
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