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Kellbell

Newly diagnosed and overwhelmed

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Hi I'm new. 

 

I'm overwhelmed .  I guess explains the slow GI motility and shortness of breath.  

Don't see rheumatologist for 2 weeks, so my head is spinning . 

 

What questions should I be asking? 

 

Thank you, 

kellbell 

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Hi Kellbell,

 

Welcome to these forums!

 

I'm sorry to hear that you've been recently diagnosed with scleroderma and are experiencing worrying symptoms. It is quite possible that the GI motility and shortness of breath that you mention could be part of the disease, but until you have your rheumatologist appointment and further tests, it's difficult to speculate how the disease will progress. It does affect everyone differently and although I understand that you must be feeling rather anxious, it's important to realise that it is not necessarily a death sentence and that whilst it cannot be cured at present, there are treatments available to help alleviate some of the symptoms and make you feel better. I know this because I have lung involvement, but am still going strong!! :wink:

 

We do recommend that our members, if possible, consult a listed scleroderma expert, as this complex disease does require specialist knowledge and expertise. I've included links to our medical pages on Preparing for Doctor Appointments and Doctor Appointment Checklist to give you some information about your query.

 

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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Welcome to Sclero Forums.  I'm sorry that you have symptoms and concerns about a scleroderma diagnosis.  Usually scleroderma diagnosis is not very fast or easy (often it takes years), so try not to get either your hopes or fears too high while waiting for your rheumatology appointment.  In the initial stages, many of us had a lot more questions than we had (specific) answers.

 

Just remember, we'll be here for you, whether your appointment is enlightening or disappointing. Since many rheumatologists seldom encounter scleroderma (it's so rare, they may only see one or two cases in their entire career, and may be very hard put to recognize it even then), most people find consulting a listed scleroderma expert to be helpful, sooner or later.


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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Hi Kellbell,

 

I'm assuming that you have had a positive blood test result but it's too early to say much until you have seen your rheumatologist. There is currently no cure and treatment is usually symptom based using drugs to aid gastric and esophageal problems, help circulation, etc.  Drugs to lower your immune response, steroids to help lung conditions, etc.

 

Sometimes surgery is necessary too, over time for various complications.

 

There are several variants, some of which are milder and have little effect on longevity and some more serious or that become more serious over time.

 

Try to get a referral to a Scleroderma specialist if you can as they do have a lot more knowledge and experience in this area.  In the mean time, you will find a lot of help and information on this site and by reading some of the threads on this forum.

 

Don't panic, the majority of cases are the milder or slowly progressing variants and there are many here who have lived with the disease for 20 or 30 years.  Even the more serious complications can be alleviated with surgical intervention.

 

A lot of research is going on, especially in the fields of gene therapy and stem cell treatment and this may hopefully eventually lead to a cure for autoimmune diseases.

 

I wish you well, but please keep in touch on the forum to let us know how things progress as we can all learn so much from each other.

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