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!


Photo

Newbie


  • Please log in to reply
12 replies to this topic

#1 deedles

deedles

    Newbie

  • Members
  • Pip
  • 2 posts

Posted 11 January 2009 - 11:55 AM

Hi! I do not have an official diagnosis but from what I have been reading I think I have the diffuse form of scleroderma. My symptoms started about 3 1/2 years ago with swelling legs and stinging, burning type feelings. After going to several doctors, I was told it was menopause and fibromyalgia. Since then my symptoms are getting worse with the stinging burning pain now in arms, back, and face. My face is swollen, and the tissue inside my mouth feels thickened. Has anyone experienced the facial swelling and the oral issues? I will be going to the Cleveland Clinic on Jan 19th to hopefully get an official diagnosis. I do not have any skin involvement other than it being extremely dry. I believe I am starting to have the Raynaud's as my toes and fingers go white at times. I also have GERD. I have a negative ANA but positive SCL-70 antibodies. This is a wonderful site, as it does offer some hope when dealing with this disease. I am scared and very depressed. I am 47 years old. Thanks for listening.

#2 jenee

jenee

    Bronze Member

  • Members
  • PipPip
  • 23 posts

Posted 11 January 2009 - 02:47 PM

Hi Deedle,

I am relatively new here, but it sounds like you are sort of scared, well you said, I am scared and very depressed. There is a book I suggest you read, The Scleroderma Book: A Guide for Patients and Families by Maureen D. Mayes.

This book, along with others personal stories here, should put your mind at ease. I find the more info we have the less we fear. Fear is usually a fear of the unknown.

Anyhow, take a deep breath and know there are people here to help you.

Also, watch a really funny movie one that has you rolling on the floor laughing, something that is distracting so you don't worry too much.

Sincerely,

Jen

#3 Amanda Thorpe

Amanda Thorpe

    Platinum Plus Member

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

Posted 11 January 2009 - 02:48 PM

Hello Deedles,

Welcome to this forum that will support in any way it can. That place of limbo, undiagnosedville, is a hard place to be, all unexplained, weird symptoms, pain, fear and confusion. Many on this forum finally checked outta the place riding as fast as they could on their diagnosis. Unfortunately sometimes diagnosis only brings its own uncertainties and questions but you've already trained to deal with them.

You might find it helpful to take another person with you to your January appointment as another set of ears will hear what you miss. It can also be helpful to write down any questions you may have so you remember them all.

Please let us know how it goes and take care. Whatever the outcome there's help for you here. :lol:

Amanda
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)

#4 Shelley Ensz

Shelley Ensz

    Root Administrator

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPip
  • 3,261 posts
  • Location:Minnesota

Posted 12 January 2009 - 04:31 AM

Hi Deedles,

Welcome to Sclero Forums! I'm glad you found us. I'll be sending good wishes your way for your appointment next Monday.
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.

#5 ozzy69

ozzy69

    Silver Member

  • Members
  • PipPipPipPip
  • 169 posts
  • Location:Taylorsville, KY

Posted 12 January 2009 - 09:54 AM

Hi Deedles,

Welcome! :) I hope your appointment goes well and you get some answers. Getting dxed is frustrating, but don't give up. I was told I had fibro for about a year and a half. Everytime I went to the doctor about something new he would just tell me it's because the fibro. When my new rheumatologist asked me how long my ana has been off the charts I was shocked. Happy that I was not crazy and sad the I had sclero. Please keep us updated.

Hugs,
Nina Lynn

#6 Jeannie McClelland

Jeannie McClelland

    Senior Gold Member

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

Posted 12 January 2009 - 10:15 AM

Hi Deedles,

Welcome from me too and I hope you weren't in the path of the weekend's big snow! A friend of mine in Cleveland had 15-inches in her yard~ :rolleyes:

You couldn't hope for a better place than the Cleveland Clinic. They're great and very, very thorough. Take Amanda's advice and watch that funny movie the night before your appointment - it'll put you in the right frame of mind to deal with the doctors, etc.

We'll all be thinking about you on the 19th and sending best wishes your way.
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

#7 Snowbird

Snowbird

    Platinum Member

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

Posted 12 January 2009 - 12:38 PM

Hi Deedles

I also wanted to welcome you. This is a great site for support and knowledge on this disease. It's a great idea to take someone with you to your appointment as suggested by Amanda...things are so overwhelming when you really don't know what's going on. If you can, it's also a good idea to make a list of the questions you really want to ask so you don't forget anything. Keep asking questions here if you have any before you go too....there's always someone that can help guide you. Hope you let us know how your appointment goes.
Sending good wishes your way!

#8 Sweet

Sweet

    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPipPip
  • 2,890 posts

Posted 12 January 2009 - 02:35 PM

Hey Deedles (love that name) - welcome to the Sclero Forums. I hope for your sake that you do not have Sclero, but I'm sure glad you are checking into it. Please keep us posted about your appointment on the 19th.

Welcome!
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#9 Peggy

Peggy

    Gold Member

  • Members
  • PipPipPipPipPipPip
  • 635 posts
  • Location:Minnesota

Posted 13 January 2009 - 07:16 AM

I just wanted to send a warm Welcome. This is a great place to go to for answers to questions, support or to just vent. This disease wears on you each and every day and it's nice to have somewhere to go to where they know exactly what you're going through. The key to this disease also is to have doctors who stay on top of it. It's ever-changing and because it can do so much harm to your organs it's important to stay on top of it. I'm finding the fatigue and the terrible pain in my legs and arms wears me down. My life has changed so dramatically since I go this disease it's scary. But you learn to adapt and realize that "it is what it is". I wish you all the best.

Warm hugs,

Peggy

#10 nan

nan

    Gold Member

  • Members
  • PipPipPipPipPipPip
  • 649 posts

Posted 13 January 2009 - 09:50 AM

Deedles,
It sounds like you might have Sjogren's too. That causes dry mouth, eyes, hurting joints. That's great that you are going to Cleveland Clinic. Good luck to you.
Nan

#11 debonair susie

debonair susie

    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPip
  • 1,638 posts
  • Location:(United States)

Posted 13 January 2009 - 11:17 AM

Hi deedles,

As you've already read...there are many very great folks on this site...among this community.
Even if they weren't able to identify with what you've been feeling...the compassion they demonstrate...through their words...is like getting a {{{{{Big Hug}}}}} :D

My own ordeal..with symptoms...began in 1991. Knowing well the feelings you speak of... I was beginning to feel like I was crazy! Doctors would look at me and say, "Well, maybe....." of course, I wouldn't even hear what was being told me...because I felt as though I was being patronized. Yes, a very frustrating, upsetting, scary time.
My husband as well as my mother...KNEW I wasn't imagining what was happening, but for 4 years, I was getting no where!

FINALLY... my internist referred me to a gastroenterologist. My doctor told me, "I KNOW you aren't imagining any of these symptoms and I, like you, want very much to know what's happening to you. Unfortunately, what's going on with you is way over my head, so I'm sending you to this doctor. I have been grateful to her ever since!

As also has been said...it's so much better to know what we are dealing with...of course...that fear...the unknown...scares most all of us.

Hang in there...and please...let us know how your appointment goes and what you find out?

Sending Soft Hugs your way,
Susie
Special Hugs,

Susie Kraft
ISN Support Specialist
ISN Chat Host
International Scleroderma Network (ISN)

#12 deedles

deedles

    Newbie

  • Topic Starter
  • Members
  • Pip
  • 2 posts

Posted 13 January 2009 - 01:25 PM

Thank you all for all of your replies and good advice!! I will definately keep you all posted on my visit to the Cleveland Clinic. A friend and co-worker will be taking me there and be my other set of ears! I think she is as anxious for me to get this figured out as I am! I drive her crazy with all my aches and pains! Anyways, do any of you know of anybody that had positive scl 70 antibodies and not had scleroderma? I went for several more tests last week and all have come back good. I had an echo, upper gi, renal ultrasound, and spirometry breathing test. They even said I don't have gerd now. They said I have a small hiatal hernia and thats it. I don't understand it. I feel terrible! Believe me I am thankful that my tests are ok but they sure arn't reflecting how I feel! Also, do any of you have the swelling legs, face and oral issues I asked about? I have been tested for that sjorgrens a couple of times and my tests have always been negative. I am beginning to think they are never going to figure this out! Well thanks again for the warm welcome. You all are a great bunch of people! I hope everyone is doing ok.

#13 canon

canon

    Senior Silver Member

  • Members
  • PipPipPipPipPip
  • 312 posts

Posted 13 January 2009 - 05:10 PM

Hi deedles,

Welcome to the forum and hang in there, it does take time. Will keep you in my thoughts and wish speedy results. Lab tests are so taxing. You don't need alot of positive labs. Hang in and someone will find out what is happening.

With Gentle thoughts,

Judy
A happy heart is good medicine.