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Trip To Good Samaritan

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#1 nan


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Posted 28 December 2006 - 01:15 PM

I absolutely love Dr. Saleh. I saw her yesterday at Johns Hopkins Rheumatology dept. at Good Samaritan. She told me that I have Sjogren's, Fibromyalgia, and CREST. I had16 vials of blood drawn and 4 cups of urine. I felt completely cleaned out. She also told me that I had to have a PFT and an echo. She also wants me to have some kind of test that tells you if your digestive tract has been damaged. She said that if it has there is some medicine that will help it. She couldn't believe that I was on 3 meds for GERD and still had breakthrough. She said to call her anytime and to come back in 6 months. She also feels that I am seeing a good doctor here. All I know is that I am in so much pain everything feels so tight!!!!!!!!! I ache so much!!!!!!!!! I hate the diagnosis, but it's good to finally know what everything is. I hope all of you are doing well. I will write again as my test results come back.
Take care,

#2 Heidi


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Posted 28 December 2006 - 01:42 PM

Hi Nan,

I am so glad that you had a positive experience with your visit to Johns Hopkins. Isn't it wonderful to feel listened to and as if your doctor truly understands and cares? I am sorry that CREST has been added to your diagnoses...but as you said, at least now you know.

Please do keep us posted on your test results.

Warm wishes,

#3 Sweet


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Posted 28 December 2006 - 01:58 PM

Hi Nan,

I'm so happy for you that you felt well taken care of - that's half the battle it seems sometimes! Sounds like she is very thorough, I don't think I've EVER had that much blood and urine taken at the same time. Sounds like she will not leave any rock unturned.
I am sorry about your diagnosis, but I know the relief when you can put a name to the symptoms.

Please take care of yourself.
Warm and gentle hugs,

ISN Support Specialist
International Scleroderma Network (ISN)

#4 janey


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Posted 29 December 2006 - 04:23 AM

Thanks for the update. Sounds like Dr. Salah gave you the information you needed to be able to start dealing with some of the issues you're having. I do hope they can correct the digestive problems. You ARE on a lot of GERD meds! Protonix and Nexium are a couple of GERD medications that are designed to not only help decrease your heartburn, but repair the damage to the esophagus as well. I'm sure there are several more out there. Let us know how the Eco and PFT comes out.

Take care.

Big Hugs, Janey