gogetter

My Wife Has Scleroderma And We Need Help

9 posts in this topic

Hello

 

Do not know where to start so bear with me................

 

My wife has hard calcium deposits 1/2 inch beneath her skin. A dermatologist said she has scleroderma and there is no cure.

 

THE DOCTOR took a biopsy and also cut out a big piece. Now there are small open wounds that at times producing the hard calcium deposits. Little small rock type of things.

 

Anyways..are there cures....support......any direction you all can direct me??????????????

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Hi,

 

You've come to a good place. The other members are helpful and share advice and give hugs when that's whats needed.

 

Did your dr explain more about the disease to you? Does your wife have to have some testing done? Most importantly, does this doctor specialize in scleroderma? If they are not well educated about this disease, you will need to find a rheumatologist that is specialized.

 

Good Luck. Keep coming back to ask questions and look for information.

 

Denelle - I have systemic sclerosis, fibromyalgia, thyroiditis, thoracic outlet syndrome, gastroparesis, GERD, and interstitial lung disease.

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Hi there gogetter,
Welcome to the sclero.org forums. I am so sorry to hear that your wife may have scleroderma. You have come to the right place for great info and support.

I am no doctor, but what you are describing sounds like calcinosis. This can be part of a syndrome called CREST. Here is a link that will take you to the ISN and goes into detail about this syndrome:
CREST Syndrome.

Please feel free to post questions or concerns any time.


*WestCoast*

 

********

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Hello, gogetter. I want to welcome you and your wife to the forums. As you can see already the folks here are eager to help. I see Erin has given you the link to our page on CREST. Here is link from that page specifically dealing with Calcinosis. You can find forum posts on the subject using the Search Forum link on the purple bar above. Hugs to you both.


Warm wishes,

Jefa

 

Carrie Maddoux

(Retired)ISN Sclero Forums Support Specialist

(Retired)ISN Sclero Forums UK Chat Host

International Scleroderma Network (ISN)

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Hello There:

 

Welcome! I am also fairly new to this site and I was just diagnosed in August. I think I know what you are going through as my husband is so worried about me and the potential outcome and progression and attack of this disease. You are definetly in the right place here as if you post a question you are flooded with sincere information, good thoughts and support.

 

The key I think if stay informed and stick with doctors that know about "scleroderma" and not just general practitioners as you will not get factual information and will waste your time, at least that has been my experience.

 

Hang in there and the most important thing, be there for each other!!!

 

Stay warm.

 

Peggy from Minnesota

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Hello,

 

Thank you for your help and warm welcome.

 

The more I looked around I would agree it is more Caicinous.

 

Thanks again and again thanks for your wonderful welcome!

 

Ron and Lynn

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Hi Ron and Lynn,

 

Welcome to the Sclero Forums. At first diagnosis, things are a bit scary because you need to know so much stuff in order to put your fears to rest. There is no cure but there certainly are treatments that can ensure a long productive life. You've been given some great links thus far. I would encourage yo to get your wife to a specialist. Either a rheumatologist, or Sclero expert. Then go from there.

 

If you have any further questions or concerns, posts away!


Warm and gentle hugs,

 

Pamela

ISN Support Specialist

International Scleroderma Network (ISN)

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Hi Gogetter:

 

I have CREST and the calcium deposits you describe. My rheumatologist has me on a gout medicine. I didn't believe it would work, so I stopped taking it and developed numerous deep calcium deposits on my arm. I went back to the medicine and no new calcium deposits have developed; in addition I have used an otc diaper rash ointment (in the baby aisle) on the deposits which has softened them enabling them to fall off. They are very painful, so do not force the process. Takes about a month for the ointment to loosen them. As stated in another post, "there is no cure" should be followed by "but is capable of being controlled". I've learned that on my own, and through this forum.


Tru

 

It is what it is...........

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