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Jazi

New from New York...

5 posts in this topic

Hello everyone.  I am happy to have found this forum as being diagnosed with Scleroderma is very confusing. 

 

I have a few questions to ask and I hope you don't mind.

 

I was recently diagnosed with Lymphocytic Colitis and my doctor wanted me to be tested for a possible autoimmune disease.  My blood work results: Titer , 1:320. Pattern is speckled and ANA screen is positive.  My Scleroderma ABS (SCL-70) is 2.8 pos H.... normal range is <1.0.  All other blood work was normal.

 

Besides my digestive issues, I am also having inflammation in my lungs.

 

My newest symptom is sore foot/ankle and burning sensation in my foot as well, no sores.  Is that from Scleroderma?

 

My doctors, and I have many, do not tell me much.  I'm assuming I have systemic but no one has confirmed this.  Is there more testing that I should be having done?

 

Has anyone noticed that a gluten free diet helps with symptoms?

 

Thank you in advance for reading this.

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Hi Jazi,

 

Welcome to these forums!

 

I'm sorry to hear that you've been recently diagnosed with Lymphocytic Colitis and have not received much information about Scleroderma from your various doctors. Unfortunately, Scleroderma is a very difficult disease to diagnose as it effects every sufferer differently and it can also be difficult to make an accurate diagnosis on the blood test results alone, as it's quite possible to have positive blood tests and yet never go on to develop the full blown disease and vice versa, as many of our members can testify.

 

I'm afraid I have no medical training as such (only a now out of date first aid certificate!) and although the symptoms you're experiencing could relate to Scleroderma, they can be a symptom of other diseases as well, which is why we do recommend that our members, if possible, consult a Scleroderma Specialist as sadly many rheumatologists do not have the knowledge and expertise to deal with this complex disease.

 

I've included a link to our medical page on Diet and Scleroderma which includes Gluten-free diet and we also have an interesting thread about Gluten-free diets which I hope you'll find helpful and informative.

 

Now that you've joined our community, I'm looking forward to reading more of your posts and getting to know you.

 

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)

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Hello and thank you for the nice welcome :)

 

I didn't know there were Scleroderma specialists.  I just wish someone would tell me if that's what I have.  First they said Lupus, now Scleroderma but then my Rheumatologist says that it's not 100%.

 

Something is going on and I just wish I knew what.

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Hi Jazi,

 

Welcome to the forums, I am sorry because it is because you are having health issues. We all have been there, the running from doctor to doctor, different diagnosis, knowing something is wrong and not getting a definitive answer.

 

I hope you can find a scleroderma specialist near you, or can even travel to see one. I only see my specialist four times a year and it is an hour and a half trip, if there isn't too much traffic. It is well worth taking the effort, however, my scleroderma specialist would not take a patient unless a scleroderma diagnosis was made by another doctor.

 

We are not doctors so cannot diagnose you but can offer you support and answers. Jo linked to great medical pages and there are many more you might find helpful.

 

Keep us posted,

 

miocean


ISN Artist

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Hi Jazi,

 

Welcome to Sclero Forums!  I'm sorry you are sick and that you have scleroderma antibodies, too. 

 

I agree with the others, it is a good idea to see a scleroderma expert, because most rheumatologists are completely oblivious to scleroderma. With your symptoms and antibodies together, it would only be sensible to have baseline testing done, along with some regular follow-up.

 

:emoticons-group-hug:


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.

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