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Searching for diagnosis and a bit freaked out

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#1 GroverCat



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Posted 06 March 2013 - 02:56 PM

Hi everyone,


     I've been searching for a diagnosis for a while, and I'm beginning to worry that I may have scleroderma. I'm getting referred this week to a rheumatologist this week for testing, but perhaps some of you can lend some insight in the meantime while I'm driving myself crazy. Next week, I'm having a colonoscopy too to rule out anything like Crohn's.


     Here's my timeline:

     age 22 started getting intermittent constipation

     age 25 started getting some serious heartburn

     age 26 started getting chronic constipation

     age 27 alternating diarrhea and constipation

     age 28 abdominal pain + the rest of the GI stuff + Hashimoto's Thyroiditis + high ANA readings


As of this month, I got my thyroid under control with normal blood work (I'm not cold anymore, woohoo!), but all of my GI discomfort remains unchanged and my ANA remained elevated. Over the last month, my joints have started to get twingy-achey. I just have my blood pressure taken yesterday and again today- it's high at 154/99. Always in the past my blood pressure has been low normal. Also I have a white stripe, about an inch long that recently appeared on my arm. I urinate 12-20 times a day, and I've been suffering recurrent yeast infections. 


My grandmother had lupus. My mom also has hypothyroid (probably undiagnosed Hashimoto's) and high blood pressure, so those are definitely in the family.


In all other ways I'm healty-- whole food, high fiber diet, exercise, etc...


Thoughts? Ideas? Suggestions?




#2 Shelley Ensz

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Posted 06 March 2013 - 09:05 PM

Hi GroverCat,

Welcome to Sclero Forums! 


I'm sorry you are sick and that you have concerns about possible scleroderma.  As I'm sure you know, it's up to your doctors to do the diagnosing stuff and impossible for us to do their job for them.  Unfortunately, you are going to have to hang in there until you get some answers from g.i. and/or rheumatologist. 

I know what it's like to have to wait for test results and to guess and/or worry and/or surf for more info in the meantime.  I'm fairly sure that just about all of us have been there, done that!  It's very hard to play the waiting game, especially when we are sick and in desperate need of answers so that we can get on some sort of healing path.


My thoughts are to try to also find something else to distract yourself with the next few weeks. Make a list of fun things you could do, projects to finish, hobbies to indulge in, movies to watch, books to read -- anything and everything that can provide you with a bit of a mental break from the diagnosis issues. Let us know both what you find out and what you are doing to try to maintain some normalcy through this challenging time.  We are with you, and thinking about you, and rooting for you.



Warm Hugs,

Shelley Ensz
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International Scleroderma Network (ISN)
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The most important thing in the world to know about scleroderma is sclero.org.

#3 Joelf


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Posted 06 March 2013 - 11:34 PM

Hi GroverCat,


Welcome to these forums!


I'm sorry to hear that you've had so many worries about your health. I know (none better! ;) ) how easy it is to Google your symptoms and then frighten yourself witless and certainly the unknown is far more scary than actually having a diagnosis. Autoimmune diseases are very difficult to diagnose and the results of blood tests are often inconclusive.


As Shelley has suggested, perhaps you could find a few ways to distract yourself whilst waiting to have the colonoscopy and seeing the rheumatologist; please do post again and let us know the results of your tests and how you got on with your appointment.




Kind regards,

Jo Frowde
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#4 GroverCat



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Posted 07 March 2013 - 08:13 AM

Thank you for your kind words-- I will give you an update when I have one!