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

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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@johnbishop

Hello @shasmith — Welcome to Mayo Clinic Connect. I'm sorry you haven't been able to find any doctor or treatments that help with your symptoms and Reynauds disease. I wasn't aware that CREST syndrome is an acronym for all the different clinical symptoms seen in a patient with the condition. The National Institute of Health Genetic and Rare Diseases Information Center has some information that describes some of the treatments here:
https://rarediseases.info.nih.gov/diseases/12430/crest-syndrome
There is a Video Q&A about Scleroderma available that might be helpful to view and read the comments here:
https://connect.mayoclinic.org/webinar/video-qa-about-scleroderma/

Have you thought about making an appointment with Mayo Clinic? If you would like to seek help from Mayo Clinic, contact one of the appointment offices. The contact information for Minnesota, Arizona and Florida can be found here http://mayocl.in/1mtmR63.

@shasmith are you able to prioritize your symptom that is most bothersome?

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My Doctor put me on nifedipine, it seems to improve my system

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