Jump to content

Do you want up to date information about Scleroderma? Check out our Medical pages at www.sclero.org for all your Scleroderma questions!


Newly diagnosed

  • Please log in to reply
8 replies to this topic

#1 melanie08809



  • Members
  • Pip
  • 4 posts
  • Location:Charleston, SC

Posted 16 March 2010 - 02:24 AM

I've been reading some of the posts and decided to share. For the last 2 years I've been trying to get a diagnosis. My partner did research and brought up to my general practitioner the possibility of scleroderma due to my symptoms. My general practitioner agreed and then the battle of a diagnosis began. My symptoms began with tachycardia and Raynauds syndrome about 10 years ago. The heart condition escalated to the need of a pacemaker 2 years ago. At which point I began to develop esophageal and motility issues.

Over the last year I have developed stiff, swollen fingers and my ring size has increased. I have been diagnosed with REM Syndrome and Telangiectasias. I have been to many specialists and until this past Monday I have been told there was not enough evidence because my labs were normal. I recently moved to Charleston SC and found a terrific team of doctors. I was diagnosed with limited systemic scleroderma.I no longer feel like I am crazy, but I am now scared of the diagnosis.

The battle to get a diagnosis was horrific. I traveled from Boston to Philadelphia seeing specialists in Cardiology, Gastroenterology, Rheumatology, Dermatology, and Electrophysiology and none were willing to see outside their little box failing to make a commitment to the total picture. I finally found a Cardiologist that used to be a Rheumatologist and made all the referrals to the appropriate doctors in conjunction with my Internist.

This is for all the people who are having trouble with their physicians. Please don"t give up and make sure you get other opinions.


#2 Shelley Ensz

Shelley Ensz

    Root Administrator

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPip
  • 3,263 posts
  • Location:Minnesota

Posted 16 March 2010 - 02:46 AM

Welcome to Sclero Forums, Melanie! I'm glad you finally got a diagnosis.

Many of us have been there, done that, with a disturbingly lengthy diagnostic process. Kudos to you for having the endurance and persistence to weather it!
Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#3 kaykay


    Senior Bronze Member

  • Members
  • PipPipPip
  • 30 posts
  • Location:Boise Idaho

Posted 16 March 2010 - 06:59 AM

HI Melanie -

Hope the new team is getting the right treatment for you and you will be feeling better soon. Have you found anything to help with those swollen hands?

#4 melanie08809



  • Topic Starter
  • Members
  • Pip
  • 4 posts
  • Location:Charleston, SC

Posted 16 March 2010 - 08:51 AM

Haven't found anything yet.

#5 Amanda Thorpe

Amanda Thorpe

    Platinum Plus Member

  • ISN Senior Support Specialist
  • PipPipPipPipPipPipPipPipPipPipPip
  • 2,921 posts
  • Location:U.K.

Posted 16 March 2010 - 11:17 AM

Hello Melanie

Welcome to the forum and well done for finally getting a diagnosis even if it is one of scleroderma. Also well done for getting a a good selection of doctors working for you.

Scleroderma is an interesting disease that effects everyone differently but one thing is for sure, there's still good life to be had after scleroderma it's just different to what you thought it would be but that's not necessarily a bad thing.

I have a great life, it's different and challenging for sure but it's still great and yours can be as well.

Take care.
Amanda Thorpe
ISN Sclero Forums Senior Support Specialist
ISN Video Presentations Manager
ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist
International Scleroderma Network (ISN)

#6 Snowbird


    Platinum Member

  • Members
  • PipPipPipPipPipPipPipPipPipPip
  • 1,008 posts
  • Location:Canada

Posted 16 March 2010 - 11:14 PM


Just wanted to say hello too! Now that you have found a great team of doctors, I'm sure you will get the best of care to go with them :emoticons-yes:

I hope you keep us updated on how you are doing.
Sending good wishes your way!

#7 Sweet


    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPipPip
  • 2,890 posts

Posted 18 March 2010 - 09:42 AM

Hi Melanie,

Welcome to the Forums. It must be a relief for you to finally have a diagnosis. I hope they can put together a good treatment plan for you now.
Warm and gentle hugs,

ISN Support Specialist
International Scleroderma Network (ISN)

#8 fjperry


    Bronze Member

  • Members
  • PipPip
  • 15 posts

Posted 22 March 2010 - 12:12 AM

Welcome, Melanie!

Like you, I was referred to many specialists; however, unlike you, I requested them because I didn't want to admit that I had sclero.

My rheumatologist diagnosed me even though all of my lab results came back 'normal'. He told me that a certain percentage of people's results come back normal, but he was making a 'clinical diagnosis'. He said that I had all the symptoms of sclero and would not change my diagnosis (like I wanted and begged him to). :(

I say all of this to let you know that what you went through, what you’re going through is a struggle that others had/have also. In other words, "You are not alone". :bye:

I know at this point phrases like that probably don't really help, but being newly diagnosed myself, after a while it will start to be of comfort to you. You have to get through the emotional and mental part of it first. I'm still struggling with those.

Please continue to get on this forum, they are very supportive and provide lots of information. I've found it to be very helpful.

Take care,

#9 Jeannie McClelland

Jeannie McClelland

    Senior Gold Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPip
  • 1,706 posts
  • Location:in the Rocky Mountains of the USA

Posted 22 March 2010 - 03:28 AM

Melanie, welcome to the Forums and thank you very, very much for your great post.

I won't say I'm sorry you've been diagnosed. If you are like me, having a diagnosis and therefore getting the proper care was a great relief after several years of mis-diagnosis and no diagnosis. That's a major hurdle and then getting a team of doctors you like, trust, and can work with is another hurdle. I'd say congratulations are in order. Posted Image

Best wishes and a warm hug,
Jeannie McClelland
(Retired) ISN Director of Support Services
(Retired) ISN Sclero Forums Manager
(Retired) ISN Blog Manager
(Retired) ISN Assistant News Guide
(Retired) ISN Artist
International Scleroderma Network