CREST Syndrome

Posted by shasmith @shasmith, Feb 25, 2019

Diagnosed with CREST 8 years ago. Last 4 years I find more symptoms are surfacing, (acid reflux, heart burn, can’t eat past 4pm, fingers and toes are twisting, Reynauds has gotten worse, heart beat is sometimes very fast, dry skin, aching joints, dry eyes, cramping muscles in hands and feet, and restless legs). Doctors just brush it off when I mention these things. I don’t want to sound like a hypochondriac, but I’m getting very frustrated about the pain and discomfort. Am I crazy, or should I keep searching for a doctor that will at least check?

@shasmith I have Undifferentiated Connective Tissue Disease with antibodies for CREST. I went to Mayo and they were very thorough in their evaluation (as long as you make the requests for diff appointments). They even do a nail fold study and a circulation study to quantify Raynauds. I think they fit 15 appointments into 1 week, which was impressive. They couldn’t do much for me but your symptoms are much more specific. Let me know if you want more info on the diff specialists/which ones I saw.

A question for you as well- do you have fatigue and brain fog?

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@1corinthians926

@shasmith I have Undifferentiated Connective Tissue Disease with antibodies for CREST. I went to Mayo and they were very thorough in their evaluation (as long as you make the requests for diff appointments). They even do a nail fold study and a circulation study to quantify Raynauds. I think they fit 15 appointments into 1 week, which was impressive. They couldn’t do much for me but your symptoms are much more specific. Let me know if you want more info on the diff specialists/which ones I saw.

A question for you as well- do you have fatigue and brain fog?

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What is CREST?

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@shasmith

Forgot my password and just found my cheat sheet… not persistent but every now and then I have a dry tickle cough. Taking magnesium which seems to help. Burping foam is annoying.. Finally having a scope run next week. Hopefully we can find something that helps. My doctor has never had a patient with CREST before. Does low hemoglobins go with these gastric issues? All of a sudden having that to deal with too and all test so far are clear. GED next week we shall see.

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Most definitely you should find a rheumatologist who specializes in scleroderma/Crest. My rheumatologist usually does a CBC panel which includes testing hemoglobin levels. Hemoglobin is a protein in your red blood cells that carries oxygen from your lungs to the rest of your body. Very important to sleep on a incline and take nexium before bed until your doctor prescribes you something. This is why you are burping foam. Also don't eat before bedtime. Borage oil, gotu kola, and bikram yoga have helped my disease tremendously.

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@fracturedd

Most definitely you should find a rheumatologist who specializes in scleroderma/Crest. My rheumatologist usually does a CBC panel which includes testing hemoglobin levels. Hemoglobin is a protein in your red blood cells that carries oxygen from your lungs to the rest of your body. Very important to sleep on a incline and take nexium before bed until your doctor prescribes you something. This is why you are burping foam. Also don't eat before bedtime. Borage oil, gotu kola, and bikram yoga have helped my disease tremendously.

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Good luck on your tests!

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@fighter

What is CREST?

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@fighter It is the limited form of scleroderma and an acronym for

Calcinosis
Raynauds
Esophageal dysmotility
Sclerodactly
Telangiectasia

which are the defining characteristics of the disease.

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@shasmith

Forgot my password and just found my cheat sheet… not persistent but every now and then I have a dry tickle cough. Taking magnesium which seems to help. Burping foam is annoying.. Finally having a scope run next week. Hopefully we can find something that helps. My doctor has never had a patient with CREST before. Does low hemoglobins go with these gastric issues? All of a sudden having that to deal with too and all test so far are clear. GED next week we shall see.

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@shasmith Haven’t heard from you in several weeks. You were scheduled for a scope—did it show anything? How are you dealing with all your symptoms?

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Hi. I just received my biopsy results about 3days ago. I have nash and aih and stage 1 liver cancer. So iam kinda taking it all in right now.

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@punky1973

Hi. I just received my biopsy results about 3days ago. I have nash and aih and stage 1 liver cancer. So iam kinda taking it all in right now.

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That is a lot to take in, @punky1973. Has your medical team made any suggestions for treatment, yet?

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@hopeful33250

That is a lot to take in, @punky1973. Has your medical team made any suggestions for treatment, yet?

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Not at this point.i have another appointment on 11/4

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@punky1973

Not at this point.i have another appointment on 11/4

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Will your appointment on 11/4 be with an oncologist? I hope you feel comfortable with the treatment plan.

Will you post with an update after your appointment?

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@hopeful33250

Will your appointment on 11/4 be with an oncologist? I hope you feel comfortable with the treatment plan.

Will you post with an update after your appointment?

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Yes I 6

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