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ginny

to anyone

5 posts in this topic

i am going back into the gastro dr. in 2 weeks and was wondering if they can actually biopsy and specifically check for sclerodoma and how it is done so I can talk to them about this. also if they can't do that is there other things they can biopsy to check specifically for sclerodoma. another question is outside of all my gastro and bladder and rsd problems (the list goes on) raynouds etc. i just started really suffering with leg pain to the point is is waking me up. it started just in my knees now my legs are waking me up and it is hurting to walk and just in the last few days my ankles are hurting and it feels like deep bone pain. does anyone have any ideas? should I be worried? what could this be? also my hands are swelling really bad at night. thankyou to anyone who might be able to help me. look forward to hearing from you and I read all about your problems and I wish you all well I know you are going through so much like me my heart goes out to you. thankyou again ginny

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Hi Ginny,

 

I don't think that a scleroderma diagnosis is made based on gastroenterologists biopsies. It's done more through bloodwork and doctor observation. You may indeed have gastro involvement, most of us do, I have celiac and GERD and had ulcerative colitis, but those can exist outside of sclero as well. Hopefully you'll go to a rheumatologist who specializes in scleroderma for a thorough check-up. Hope this helps...

Peace,

Karen

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Hi Ginny:

I have gone through more tests than I care to think about to try and get a diagnosis. I see the gastro-guy Mar. 6 and all the other doctors are hoping that he has the answers for the scleroderma. I think it's blood tests that show up the sclero. I have gone through 3 and one more to go of barium swallow tests to see how the esophagus is involved. Did a esophageal motility study, lactulose hydrogen breath test to see if there's bacteria in the stomach, colonoscopy, etc etc etc.

I had extreme leg pain and feet and hand swelling but that was from polymyositis which they tell me is an overlapping disease. They may want to check you for that as well.....I did have a muscle biopsy on my leg for the poly. I don't think they can do a biopsy for sclero but don't know for sure. Hope that you will give an update when you find out more. What awful things we have to go through - Hugs - Lisa


Life is NOT meant to be a struggle. Life is meant to be joyously abundant.

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Ginny,
I don't find anything that indicates an esophageal biopsy used to diagnose scleroderma. Diagnosing scleroderma can be very difficult. It is usually diagnosed through a combination of blood tests and symptoms. On our difficult diagnosis page it states that "Sometimes scleroderma is diagnosed by skin or renal (kidney) biopsies". Your endoscopy biopsy would probably be used to test for specific esophageal problems that could be associated with scleroderma. I hope you're seeing a rheumatologist. If not, please request a referral from your GI doctor.

I do have that exact pain in the leg that you described. You did a great job in describing exactly how it feels. For me, it comes and goes. Right now it is here in full force. I take an over the counter arthritis pain medication that helps. I can go for months without it, then WHAM - it hangs out for a couple of weeks then goes away again. Because I have polymyositis as well as sclero, I'm not sure which one, if not both, is the culprit. Please mention it to your doctor as well as all new symptoms.

I hope you get more information and some results very soon

Big Hugs,


Janey Willis

ISN Support Specialist

(Retired) ISN Assistant Webmaster

(Retired) ISN News Director

(Retired) ISN Technical Writer for Training Manuals

International Scleroderma Network (ISN)

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Hi Ginny,

 

Sorry to hear about your problems. I agree with Karen that the GI problems can be outside Scleroderma.

 

In my case, my GI specialist was the first one to mention probable Scleroderma while doing upper endoscopy and the second doctor to mention Scleroderma was infectious disease specialist. My radiologist taking CT scan of my lungs also noted probable cause as Scleroderma for damage to my lungs. These comments helped my primary doctor to suggest a visit to Rheumatologist who diagnosed my Scleroderma. My all blood tests were negative. I went through extensive testing of MS and Lupus, before I was diagnosed with Scleroderma.


Kind regards,

 

Kamlesh

 

 

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