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Had an esophagogastroduodenoscopy ( EGD) Thursday and before I even got home my doctor already got a hold of me and said the doctor that did the test feels very strongly that I have Scleroderma.

 

I'm scared reading everything. Please I really need to talk. Please help me understand a little bit better.

                 

Thank you!

                 

Michelle Fisher

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Hi Michelle,

 

Welcome to these forums!

 

I'm sorry to hear that you have concerns regarding scleroderma. I would just point out that it is a most difficult disease to diagnose correctly and getting into a panic at this stage won't really help you.

 

Please note that I have no medical training (apart from a now out of date first aid certificate) but I would suggest that after consulting with your doctor regarding your EGD results your first port of call would be to seek a referral to a listed scleroderma expert, who has the expertise and knowledge to deal with such a complex disease, should this be necessary in your case. You can then be guided as to the best advice for you regarding possible treatments etc.

 

Kind regards,


Jo Frowde

ISN Board Member

ISN Secretary of the Board

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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Hi Michelle.....welcome to the forums, even though no one wants to be here!!!  My son was diagnosis'd,  at age 18,  because of esophageal testing and + blood work.  At the time, that was his main complaint.  He was later diagnosis'd with UCTD, Undifferentiated connective tissue disease, and given the drug, Plaquenil.  He's now 13 years in to the disease and it rarely causes major issues. There have been so many medical advancements that reading the web can cause unnecessary anxiety.  Finding a good rheumatologist/specialist is top priority.  Reduce the stress/anxiety is another top priority.  Read the updated medical articles on this site......not random web articles that stress you'll turn to *rock* and die a horrible death within a couple of years!!! 

 

Take care, everyone.

Margaret

Mom to Gareth,  DS/ASD

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Hi Michelle,  I get scared all the time.  It comes, it goes.  I think having a good bunch of folks who understand your fear really helps.  I have the esophageal thing, intestinal, lung, and kidney involvement. But I've had symptoms gradually over the past 20 years. I do a lot of soothing things for myself, like coloring or painting, writing, reading, since I've got so much fatigue that working physically is pretty much out. It's hard to stay positive when you're scared, and yours may be a lot more limited than mine,  I hope it is. 

 

You're brave to put your scared feelings out there, and I'll bet almost everyone on this forum has felt scared at some point so you are definitely not alone.  I have found hypnosis particularly helpful, or guided imagery, especially we feel anxious.  Go to your app store on your phone and type in hypnosis and a lot of free and low cost ones will come up. I'm glad you asked for help. This is sometimes really hard for me. 

 

Best, Nancy

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