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Hanlucks

New to Scleroderma? Help!

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I have Hashimotos and have been really having awful symptoms lately. They ran the ANA test and it came back positive for sclero with a 2.3. I have a referral to a rheumatologist but I’m so scared. The only symptom I have is on and off swollen joints.

 

Also - when I see a rheumatologist what tests should I expect? 

 

Does anyone know about this? Can a blood test be wrong - could I be okay? Is this 100% sure I have it? My mind is reeling. 

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Hi Hanlucks,

 

Welcome to these forums!

 

I'm sorry to hear that you're suffering with Hashimotos and have the added worry of possible scleroderma complications as well. I would reiterate the advice we always give regarding blood tests; whilst a useful tool to help to obtain the full picture, they are by no means conclusive or the be all and end all of a diagnosis and it is 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. Far more important are the clinical signs and symptoms of the disease. We do have numerous threads on this subject.

 

We do recommend that our members consult a listed scleroderma expert as this complex disease does require specialist knowledge and expertise, in order to be dealt with correctly and can be out of the league of a common or garden rheumatologist. I've included links to our medical pages on Common Medical Tests for Scleroderma and Preparing for Doctor Appointments, which I hope you'll find helpful and informative.

 

Whilst I can understand your concern at the possibility of having a disease like scleroderma, I would advise you to try not to be scared at this stage (easy to say, I know :wink:) as things may not be as bad as you fear and unfortunately worrying and stressing over a possible diagnosis of scleroderma could exacerbate the problem and will almost certainly make things worse.

 

Please keep posting and let us know how you get on with your rheumatologist's appointment.

 

:hug-group:

 

Kind regards,


Jo Frowde

ISN Board Member

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 Hanlucks,

 

Welcome to Sclero Forums!  I'm sorry you have Hashimoto's and concerning blood work and swollen joints.  I'd urge you not to panic over scleroderma, just yet!  Sometimes Hashimoto's can cause a positive ANA, although no telling if it's the sort you have.  Hashimoto's can also cause swollen joints, from slow metabolism.  So, right now, you might be in the clear!  It's way too early to panic over scleroderma, even if you actually had scleroderma, it'd be on the extremely mild side at the moment, from the general sounds of things. 

 

Some phrases that helped me in the early days were, "Don't trouble trouble until trouble troubles you!" (but you could reasonably argue, this is already some sort of trouble) and "It is what it is."  I hate the line, "It is what it is," but I think the point of it is that since it is whatever it is, whatever I think about it surely isn't going to change it much, one way or another.  So it reduces my temptation to endlessly dwell on the subject (aka rumination which is a fantastic precursor to anxiety and depression, if not nipped in the bud in the early stages.)

 

See what your rheumatologist says. And if there's still any remaining doubt about scleroderma, see a listed scleroderma expert.  Okay, now you have a support group -- and a plan of action. You can do this thing!  It won't be as bad as it appears right now.  

 

But, that said, we all do know what that initial panic is like.  Pretty much we've all been there, done that, and wish we hadn't strung ourselves out over it.  Yes, that's my biggest regret in what I've been through, is the pre-stressing before knowing for sure what I was dealing with.  It's a trick to not do that, when it's our very own health and well being that is in question! 

: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.

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I have limited scleroderma or CREST syndrome and it has bought on some terrible symptoms with the Raynaud's being the worst. My hands nose, ears and feet are effected but they not only go white because of the lack of blood being transported, but they turn black when a bad attack comes on. 

 

So you must turn your fear into education, because here you will have the support and even support ways and tips to handle your symptoms. 

 

Just remember forearmed is forewarned 

 

With Respect 

Charly 

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