Wrongly misdiagnosed and just finally got correct diagnosis after fifteen years.

4 posts in this topic

I am still seeing how much damage has been done over the last 15-20 years. They told me I had chronic shingles with chronic fatigue and adult attention deficit disorder (ADD). Has anyone been in this same situation? I have always had ADD but now the other stuff makes so much sense.


It irritates me that I may have lots going on when so much could have been done, but trying to stay positive and continue to be a single mom and work a full time job. Oh, get this, I am a medical assistant in a big office but never got the right diagnosis even working there. It makes me realize how people overall don't know about scleroderma and try everything else, yet never thought of a rheumatologist!! I want to go back to school and become a physican assistant so that I can prevent this happening to someone else!!


I can't really show my true feeling with the others truly understanding because I don't look sick.

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Hi Jenstew09,


Welcome to these forums!


I'm sorry to hear that it's taken such a long time for your doctors to reach a diagnosis of scleroderma. Unfortunately, this can be an all too familiar story, as this complex disease can be incredibly difficult to diagnose correctly, not least because it manifests itself in so many different ways and affects all sufferers differently.


We do recommend that our members, if possible, consult a Scleroderma specialist and I've included a link to our listed experts, which I hope you'll find useful.


Kind regards,

Jo Frowde

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 Jen,


Welcome to Sclero Forums.  I'm sorry your road to diagnosis was so long and confusing. Most unfortunately, that is more common than not. That is why it is so important for all of us to work together to raise awareness of this disease!



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

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Belated "Hello" Jenstew09! Wonder how much your ADD gave the medical community "permission" to lay off your symptoms onto...well...things other than physical? Well, you're here now and you know what's, much as we can that is!


Shelley's already said that many people here have had long and arduous journeys achieving a scleroderma diagnosis, unusually I'm not one, having been diagnosed in about 6 months. Have a good roam around the site and post when you like.


Take care.

Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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