miocean

Calcinosis

5 posts in this topic

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


ISN Artist

Share this post


Link to post
Share on other sites

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,


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

Share this post


Link to post
Share on other sites

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:


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.

Share this post


Link to post
Share on other sites

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.


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)

Share this post


Link to post
Share on other sites

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


ISN Artist

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now