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I have questions, can someone help me understand?

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I must first start at the beginning. At 27 I had trouble with my hands locking up, my legs were weak, it was about 3 months after birth of my 3rd child, had blood tests, was sent to a rheumatoid arthritis doctor in a bigger city, at which time I had a high sedimentation rate, positive ANA, so he ran more tests because he wondered about scleroderma. Whatever tests those were back in 2000 I can't remember, but I was diagnosed with fibromyalgia and arthritis at that point. 


Fast forward I continued to have pain etc. Over the years, around age 40 things got worse, I was diagnosed with neuropathy by a neurologist, was referred to a RA doctor diagnosed with autoimmune disorders they thought could be overlapping, fibro, osteoarthritis in which my fingers have already started to twist, some worse than others, had weird purplish nodule like things on my thighs so was referred to dermatologist by my family doctor which said those just look like small skin cysts and if they keep bugging me he could remove them which I've still not had removed. A new RA doctor took over my case just this year because my old RA doctor left the practice, the new RA doctor was awesome,  she read my charts, well, what she had of them and asked me numerous questions about history. I explained about family history, my mom had been diagnosed with lupus in her mid 30s and how I'd been having issues since age 27, my aunt has some weird autoimmune disease I can't pronounce, but this doctor knew the name of it and she decided to run tests again to get a more thorough look at what others have seen with my blood tests. I always have an elevated sed rate, a positive ANA 1:640, ANA pattern is centromere, before seeing the results my doctor stated she was pretty sure it was Crest Syndrome. I was able to see my test results online, but they never let you read what the doctors notes are about the findings, only the levels and if they are abnormal, which the doctor explained that I appear to have signs of Crest the numbing of my fingers and feet get so cold that when they do warm up they turn red and swell, I have patchy dry skin on my forehead, arms, sometimes my hip or rear end, I have a tattoo that has become hard and swollen with peeling skin, I have those purplish nodules on my thighs that have dry skin in the middle, I have had issues with swallowing. Matter of fact I choked on a French fry 3 years ago which threw me into pneumonia that lasted approximately 3 months because it kept coming back, every time I catch a cold I have to be careful because I get bronchial asthma or pneumonia, I choke on foods and drinks if I'm not careful because I will aspirate. 


Can anyone else tell me about these lab tests, because the letter the doctor sent stated that just as we had talked in the office about the symptoms during your visit so if you notice any tightening of the skin please contact our office we will get you in sooner than your yearly check up.  Can someone please explain the blood tests?  Because from the way I've gathered I'm positive for Crest Syndrome, I am going to contact her to hopefully speak with her or her nurse to better understand everything.  I have seen the ANA pattern of anticentromere and centromere so which is correct?

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Hi Charwim,


Welcome to these forums!


I've included a link to our medical page on CREST syndrome, which I hope you'll find helpful and interesting.


Regarding your blood test results, please see our sticky thread here.


Kind regards,

Jo Frowde

ISN Board Member

ISN Secretary of the Board

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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