Anyone have Scleroderma?

@vsunshine, I moved your message looking for others diagnosed with scleroderma to this existing discussion:
- Anyone have Scleroderma? https://connect.mayoclinic.org/discussion/scleroderma-limited/

I did this so you can connect with other members easily like @dycota13 @modelmiche @fourof5zs @sickirishlass and more.

Is this a recent diagnosis for you? What symptoms are you dealing with?

I do not have scleroderma, but a dear friend of mine does. I would like to know more about it and how people deal with it so I can more aware of how to "be there" for her and understand what she is going through. I will only read messages, but will not contribute comments.
Thank you.

Understood. In that case, I think you might appreciate reading through these related discussions:
- Scleroderma: How can I help my sister?: https://connect.mayoclinic.org/discussion/sclaroderma/
- Scleroderma and Raynauds: https://connect.mayoclinic.org/discussion/scleroderma-and-raynauds/
- Scleroderma Gut Health: https://connect.mayoclinic.org/discussion/scleroderma-gut-health/
- Highly recommend Dr. Griffing's Video Q&A about Scleroderma: https://connect.mayoclinic.org/discussion/highly-recommend-dr-griffings-1115-scleroderma-video-a-question/

Hi @vsunshine
I was diagnosed with scleroderma in about April of this year. I have been seeing providers since 2018 because my hands are so painful, and they kept saying it was carpal tunnel which I do only have a mild case of. My provider finally ordered inflammation markers this spring and the result listed CREST which is the old terminology. Now called systemic sclerosis. Mine is the limited form at this time meaning they think it is limited to my hands, forearms and feet.
I have had symptoms for about 18 years and of course my medical record says psychosomatic.
It would be nice if there was a way to remove that since they have been missing this for all these years.
Have you been diagnosed? Which state do you live in?

I have the form of Scleroderma called Morphea. The Dermatologist diagnosed me by biopsy in 1991. I do not have any treatment for it.

There is different kinds of Morphea, They find out witch kind with a blood test. I was diagnosed this morning but I have to wait for blood test to find out what kind.... It came out after getting the moderna shot. I still have swollen lymph nodes so they don't know what's going on yet... But did a biopsy to find this out. I'm kinda worried about the pain.

I have had a diagnosis of lupus (and/or mysositis) for almost 20 years but my PCP did a full ANA panel and I have >8 anti-centromere antibody (previous ANA was 1:5120). So scleroderma is now being investigated. I watched a video that said "limited" meant limited skin effects to hands and a few other areas but that there were still internal effects, especially pulmonary hypertension, with that particular antibody.

I have been really sick this summer from the sun. My kidney function has dropped. And my hands and feet hurt. Hands are starting to curl up and look crooked. My appointment with the scleroderma program isn't until October unless I ask the PCP to push for an earlier appt. due to medical necessity. I am not there yet.

I hope someone is still on this thread! I know it is old.

Hi, Windy Shores,

I'm sorry to hear about your health problems. Lots of sympathy headed your way.

I only have a tidbit of experience to share about scleroderma.

I tested positive for the SCL 70 antibody 3 times over the course of maybe 8 years. I have another autoimmune disease, so doctors do blood tests on me pretty frequently. I never had any of the visible skin indicators.

Apparently, there are different blood tests for scleroderma. Eventually, one of the labs sent my blood sample out to another test that showed I don't have scleroderma. My rheumatologist and dermatologist seem pretty confident that I don't have and won't get scleroderma based on that particular test.

Sorry to add another item to your list of considerations, but I hope maybe it will help.

Good luck and peace to you!

@annewoodmayo There is a problem, I have read, with false positives with SCL 70, which can be proven with other antibody tests. However there is not the same issue with anti-centromere antibody tests apparently.

It is apparently not possible to have two different antibodies for scleroderma. Sorry you went through that!

Hello, I have been having diffuse pain, tingling and numbness, muscle and generalized fatique throughout my body. I also have bloat, constipation and frequent urination when pain is severe. My lung function, heart and skin appear relatively normal. My ANA and SCL70 test came back positive, although their levels were not as high as mentioned by some of the members in this posting. My neurologist said that I may also have small fiber neuropathy due to reduce nerve number on skin biopsy. I was wondering if scleroderma can present with the symptoms I have-- generalized pain/neuropathy and fatigue and GI and urinary issues. The rheumatologist said that I don't have a classic sign of scleroderma and from reading info on this disease on the internet I learned that that the symptom can be variable. Any insight to this will be greatly appreciated.