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nan

Introduction

6 posts in this topic

Hi! My name is Nan. I just joined the forum last night and the first thing I did was to reply to Laura's problem. I too am in the midst of doctors trying to figure out what is wrong with me. In 1998 I was diagnosed with Fibromyalgia, Raynaud's, Sjogren's, GERD. In 2004 I had a major GI bleed and it was discovered that I have Gastric Antral Vascular Ectasia(watermelon stomach) which usually goes along with Scleroderma. Last January I got an esophageal yeast infection and I am still having trouble swallowing and horrible heartburn. I started seeing a new rheumatologist in February. All of the bloodwork he did came back in the normal range. He feels that I have an overlap with scleroderma. He then said that he thinks I could have Scleroderma Sine Scleroderma because I don't have any skin manifestations. He said that the only way to get a definite or good diagnosis was to go to Johns Hopkins or Cleveland Clinic. I am waiting to hear from Johns Hopkins. My rheumatologist keeps changing back and forth as to what he thinks I have. I know it's hard when the bloodwork looks ok, but I am really frustrated. I go to him tomorrow. I have been having a lot of pain in my feet and hands! I itch a lot! The swallowing has been really bad too. I will see what he says. I am fortunate in that I was able to do disability retirement. I am 49 and I have a great husband and a 14 year old son. I am pretty lucky!

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Hi Nan,

 

I already posted to you in Lauras thread but in the event you didn't see it, I want to welcome you again!!!

 

I'm sure sorry it's because you have Scleroderma. The 'runaround' can be perplexing that is for sure. My rheumatologist does put value in testing, but he states the symptoms play a much larger role in the picture for him.

 

I have a rheumatologist appointment tomorrow too, so we'll have to update each other.

 

Sounds like you have a very supportive family and that is so very important.

 

I'm sure glad you posted and we look forward to hearing from you more often.


Warm and gentle hugs,

 

Pamela

ISN Support Specialist

International Scleroderma Network (ISN)

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Nan,

 

I'm sure you are going to get a lot of great advice and support here. I'm sorry you are getting the runaround too. It sounds like you have been through a lot. If you have any questions about the Cleveland Clinic you can e-mail me. That is where I went for my second opinion.

 

Good luck with your appointment tomorrow. Let us know how it goes.

 

Laura

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Hi Nan,

 

Welcome to the forums! I am glad you found us, but sorry it is because of your symptoms. It is very frustrating to not have a definitive diagnosis. My diagnosis is Undifferentiated Connective Tissue Disease and my rheumatologist has told me that my disease has been all over the place. I was very frustrated for the first year and really focused on trying to get "the" correct diagnosis. But after that I calmed down and realized what was more important was adequate treatment. I have learned (mostly from reading the posts here) that I am getting appropriate treatment and my rheumatologist has done a good job of treating the majority of my symptoms and keeping my disease (whatever it may be) under control.

 

I do hope you get some answers soon, and more importantly, some relief!

 

Warm wishes,

Heidi

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Hi Nan,

Welcome to the forum! I am glad you have found us here but I am so sorry that you are in limbo right now with a diagnosis. Scleroderma is definately hard to diagnose as it affects everyone differently. Hopefully your doctor will at least be able to trat your symptoms with out a definate diagnosis. Have they done an endoscopy to check your swallowing problems and esophogus? I am sure if you get into the Cleveland Clinic or JH you will have many tests performed so they can get to the bottom of it. Please let us know how your appointment goes!

 

We are all here to support you and give advice when we can.

 

Hugs,

Lisa


Lisa Bulman

(Retired) ISN/SCTC List Coordinator

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Fundraiser

International Scleroderma Network (ISN)

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Nan,

I'd like to join the others in welcoming you. I'm sorry you are here due to your health problems and we all know how frustrating the lack of a definitive diagnosis can be. Hopefully, you will get some answers soon. Let us know if you hear back from John Hopkins and the results of that visit. It's wise that you are seeking out a specialist especially since your current rheumatologist isn't sure. It does sound like he is really trying which is great.

 

Let us know how your appointment goes tomorrow and again, WELCOME!

 

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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