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Biomarker for Diffuse Scleroderma skin has been discovered!


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Pregnancy and Scleroderma


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#1 carrienicole

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Posted 11 September 2009 - 08:55 AM

I am 26 and just found out I had scleroderma after the birth of my daughter in January 2008. I had a C-section and immediately after I felt totally different. I seemed to get sicker and sicker and had numerous trips to ER's etc. I had painful spots on my fingertips, white spots developing all over my body, chest pain, tired all the time, numb and burning hands and feet, my arms would go numb every night no matter the position. I had weird tiny veins popping up on my cheeks and chest terribly bad, etc.

They ran tests and mine came back positive for ANA and Scl-70,which they diagnosed me as having diffuse scleroderma. I took steroids for a month and noticed that when I took an ibuprofen the tingling wasn’t as bad. So I started taking an ibuprofen or 2 a day. Eventually all my symptoms diminished except for the veins and white spots and occasional tingling limbs.

Now here’s my problem. At that point in my life I thought I was going to die any day, but for the past 6 months or so I have been fine. I don’t see any specialists or anything cause I don’t have insurance and I am worried about what they will tell me next.

Anyway I just found out I am pregnant, like 5-7 weeks. I am so scared that if I keep the baby all my symptoms will return either before or after my C-section. (I have to have one it will be my 3rd.) Ii am worried I won't make it and my little ones will be without me. I want to know if anyone else has had C- sections and how you felt afterward? Did things get worse?

I forgot to mention I haven’t had any skin thickening and am afraid it will be triggered by the C-section. Please any input will be greatly appreciated!

#2 Shelley Ensz

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Posted 11 September 2009 - 10:58 AM

Hi Carrienicole, and welcome to Sclero Forums.

I'm sorry to hear of your predicament. You're going to need to consult your doctor about this, of course. Perhaps you were misdiagnosed in the first place, or perhaps it has all cleared up with your ibuprofen? Sometimes the blood tests are wrong, and sometimes people just get a whiff of connective tissue disease, and then it goes away. In any event, it seems a little bit unusual for a doctor to diagnose diffuse scleroderma in the absence of widespread skin involvement or pulmonary fibrosis, things like that. So, it at least opens the door to the possibility of diagnostic error, which would work in your favor in regard to the chances of having a normal pregnancy.

Maybe you should ask them to repeat the Scl-70 test? Perhaps that would help set your mind at rest, if it's negative this time around, or inspire closer watching of you during the pregnancy, if it is still positive. See our section on Pregnancy and Scleroderma.

Aren't you also pretty worried about how to afford the medical expenses of another baby, without any insurance?
Warm Hugs,

Shelley Ensz
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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 Sweet

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Posted 11 September 2009 - 11:42 AM

Hi Carrienicole.

Welcome honey. I can feel your stress. I would be afraid too. Shelley gave you great information though. It really would be valuable to have a follow up appointment with a rheumatologist, to double check tests, talk and put your mind at ease.

Keep us posted.

Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#4 Sweet

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Posted 11 September 2009 - 11:43 AM

Shelley, I love your new "picture" :D
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#5 Deb1million

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Posted 12 September 2009 - 11:30 AM

Hello Carrienicole,

I would like to try to reassure you that things may not be as bad as you fear. I have 6 autoimmue conditions including diffuse systemic scleroderma, and have had two healthy children by c-section, now 24 and 22.

So if I can ease your worries in any way, I would just like to say - don't panic. Things may turn out fine for you and your children in the future. Keep positive as much as you can, and know that we are all here for you.

Best wishes, let us know how you get on?