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#1 avilamay13

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Posted 24 July 2016 - 06:12 AM

Hello everyone,

 

I am new to the forum, and to my diagnosis as well. I was diagnosed with diffuse systematic scleroderma. I was diagnosed while I was 7 months pregnant with my 2 month old baby. I had symptoms before the diagnosis, but they were so different that they were treating me for isolated things like heartburn, a believed skin rash, and for a supposed carpal tunnel. When I became pregnant my skin manifestation spread rapidly, I began with swallowing problems, and the joints in my hands became more stiff and contracted. My knees also suffered greatly in range of motion and in pain. It has been difficult after my baby was born. I weighed 137 pounds prebaby now post baby I weigh only 113 pounds. I lost weight during the whole pregnancy. My delivery was very hard and complicated.

 

Now I face the fact that my body is so different from how I had it. I feel a little sad. I have always been a very independent person, and having to ask for help for simple things I took for granted before frustrates me. I will get used to it. I do have a few questions. Does joint contracture get better with treatments? Is there any exercises I can do to help? Does anyone else have a problem with weight loss or difficulty gaining weight? Thank you for your feedback. I am glad that there is a way to communicate with others going through similar situations. I have another unrelated question. How can I add my picture to my profile?



#2 Joelf

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Posted 25 July 2016 - 08:27 AM

Hi Avilamay13,

Welcome to these forums!

I'm sorry to hear that you've been diagnosed with diffuse scleroderma and that you have been suffering with so many unpleasant symptoms. We do recommend that our members, if possible, consult a listed scleroderma expert, as this complex disease does require specialised knowledge and expertise.

Unfortunately, the problems you've experienced before being diagnosed have a very familiar ring to them, as many of our members have had the same trouble with various different symptoms. One of the problems with scleroderma is that it manifests itself so differently and affects all sufferers differently, so it does make it a very difficult disease to diagnose and treat.

Joint and contractures problems are one of the symptoms of this disease and I've included a link to our medical page on Musculoskeletal Involvement, which I hope you'll find helpful and informative. It includes a section on Hand and Joint Involvement, including joint contractures and hand exercises.

I'm afraid that weight loss due to scleroderma is something that I'm unable to advise you upon (I should be so lucky!! :wink:) Due to the medication I have to take, unfortunately I'm constantly trying to lose weight, not put it on!! However, we have had other members who've found that they have experienced weight loss and they may be able to give you some first hand advice.

Regarding your query about adding a photo to your profile, I've included details of uploading a Forum Avatar, which I hope you'll find helpful. Should you have any problem with uploading a photo, then if you let me know and email me the photo you would like to use, I can upload it for you.

Kind regards,

Jo Frowde
ISN Assistant Webmaster

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#3 Shelley Ensz

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Posted 02 September 2016 - 09:29 AM

Hi Avilamay,

 

I somehow missed your first post to Sclero Forums and just found it now.  I'm very glad you joined us, but sorry that it's because you came down with scleroderma while you were pregnant. It must have been jarring to deal with such worrisome health issues while you were pregnant. I mean, there's never a good time to be sick, but there are worse times to be sick, and pregnancy is one of them as it creates a concern for both you and your baby. 

 

Jo has answered your questions fully, as usual (isn't she just the tops?!), so I have little if anything to add. I would really urge that you consult one of the listed scleroderma experts, though. There are new breakthroughs all the time for scleroderma, and an expert can give you access to clinical trials and breakthroughs. 

 

Have you figured out how to create a forum avatar yet?  We'd love to see what you'd choose for an avatar, and I look forward to hearing more from you. Here are some warm hugs for you, and a teddy bear hug for your baby.

 

:hug-bear:

:hug-group:


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.

#4 avilamay13

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Posted 12 October 2016 - 06:23 PM

Joelf,

Thank you so much for your feedback. I had not been back because there were some conflicting diagnosis. The rheumotologist thought I could have eosinophilic fasciitis instead of scleroderma. It turned out that I do have scleroderma after an MRI, x rays, and a deep skin biopsy I have a final diagnosis. It is scleroderma.

 

I am still trying to figure out how to go up in weight. I am currently struggling between 112 and 108 pounds. I am glad that I do have the UCLA scleroderma center an hour away. I am going to have to get a referral because I have an HMO insurance. I am still working on the avatar. I think I need to do it from my laptop instead of my cell phone. Thanks so much.



#5 Joelf

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Posted 12 October 2016 - 07:41 PM

Hi Avilamay,

Whilst obviously it would be preferable not to have any illness to contend with, it is a small comfort to receive a diagnosis. At least you're now aware of the cause of your symptoms and can go forward with your treatment, which hopefully will improve things for you.

Do let me know if you need any help with uploading your avatar; I think that you will probably need to use your laptop, rather than your mobile phone to upload it successfully.

Kind regards,

Jo Frowde
ISN Assistant Webmaster

SD World Webmaster
ISN Sclero Forums Manager
ISN News Manager

ISN Hotline Support Specialist
ISN Chat Host
International Scleroderma Network (ISN)