Jump to content


Did you know that exercise increases inflammation in systemic sclerosis?


Photo

En Coup De Sabre... And an Introduction :)


  • Please log in to reply
12 replies to this topic

#1 mopsygirl

mopsygirl

    Bronze Member

  • Members
  • PipPip
  • 17 posts

Posted 10 December 2010 - 11:29 AM

Hi, I'm Kelsie.

I'm 21, and my whole ordeal began when I was in 7th grade. Since the time of onset, I have had three seemingly unrelated symptoms- terrible gastrointestinal problems, chronic fatigue, and the "scar" on my forehead. I have had 2 surgeries to correct the stomach problems, and numerous visits to the neurologist to try and explain the fatigue (unsuccessfully). The line on my forehead has not only darkened over the years, but it has become indented too. I also have a small patch the size of a dime at the top of my hairline that has begun to bald.

My doctors have never been able to connect this constellation of symptoms, but I think I have finally found the answer myself in Linear Scleroderma "En Coup De Sabre." I have an appointment set for 2 weeks from now with both a Dermatologist and a Rheumatologist, and I am having a lot of anxiety over what will happen when I go. I know that this disease is incredibly rare, but looking at pictures and reading stories of others who have it leaves no doubt in my mind that this is what I've been suffering from all this time.

I joined this site because I don't know where else to turn to for advice and support regarding Scleroderma. Any information would be greatly appreciated.

#2 Sheryl

Sheryl

    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPip
  • 1,029 posts
  • Location:Brooklyn, Michigan

Posted 10 December 2010 - 11:46 AM

mopsygirl, you have come to the right place to seek and search for information. It is funny how we sometimes diagnosis ourselves and wonder why our doctors didn't put 2 and 2 together. I am happy you have found a couple of specialist to go to. When searching for a Rheumatologist I hope you made sure this doctor was treating other patients with Scleroderma. Or make sure he/she had training under a Scleroderma specialist or that they themselves are a specialist in rheumatic diseases. If not you may want to look deeper into the matter. Have you looked under Aopecia for information on the bald area at your hairline. I look forward to what your doctors have to tell you. Others will show up shortly and give you more places to search here on the site to help you out. I am on my way out the door but wanted to welcome you to our group.
Strength and Warmth,
Sheryl

Sheryl Doom
ISN Support Specialist
(Retired) ISN Chat Moderator
International Scleroderma Network (ISN)

#3 mopsygirl

mopsygirl

    Bronze Member

  • Topic Starter
  • Members
  • PipPip
  • 17 posts

Posted 10 December 2010 - 11:59 AM

Sheryl,

Thank you for the warm welcome. I have to go through the referral from my general practitioner to the specialists before I can even attepmt to look for a Rheumatologist specializing in Scleroderma, and that is super frustrating. However, for once in my life I feel like there are other people out there who can understand what I am going through, and understand that there is a true link for all of my ailments. Do you happen to know what kind of treatments are available for En Coup De Sabre, if there even are any? There is not much information about it on the internet, and I'm wondering how many people are afflicted with this disease? I look forward to speaking with you more!

#4 Jeannie McClelland

Jeannie McClelland

    Senior Gold Member

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

Posted 10 December 2010 - 12:03 PM

Hi Kelsie,

Welcome to the forum! I'm glad you found us, but am sorry it had to be because of scleroderma.

We have lots of information on the site: Linear (Coupe de Sabre) where there will be treatment options,  GI issues. There are lots of patient stories too and I'd like to point you at one in particular, that of Emmi Myohanen, who is the ISN Finnish Translator. Emmi is just about your age and also has localized scleroderma.

We often tell new members how important it is to have a good written medical history in your hand when you see a new doctor - things like when did each symptom start, has it gotten better or worse, general health info, etc. It's also a very good idea to have a list of questions written for your doctor because we always seem to forget to ask something! biggrin.gif

Do you have someone who could go to your appointments with you? It can be a big help to have an extra pair of ears and hands to take notes. Sometimes just having someone else there will encourage a doctor to be a bit more thorough in explaining things.

Let us know how you get on, OK? We care.


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

#5 mopsygirl

mopsygirl

    Bronze Member

  • Topic Starter
  • Members
  • PipPip
  • 17 posts

Posted 10 December 2010 - 12:20 PM

Jeannie,

Thanks for the great advice. I will try and get in contact with Emmi :)

My mom is extremely supportive and will definitely go with me to my appointments. It's been really difficult for her to have to see me going through all of these medical problems, and I feel really bad for dragging her through all of it.

#6 Joelf

Joelf

    Star Ruby Member

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPipPip
  • 4,610 posts
  • Location:West Sussex

Posted 10 December 2010 - 08:00 PM

Hi Mopsygirl

Welcome to these helpful and informative forums!

I'm sorry to hear about your worrying symptoms but you've definitely come to the right place for lots of help and advice. Jeannie and Sheryl have given you very useful information and we also have a page on emotional adjustment which I do hope will be of help to you.

I'm looking forward to getting to know you better and reading your posts. Do please let us know how you get on with your dermatologist and rheumatologist's appointments.

Jo Frowde
ISN Assistant Webmaster

SD World Webmaster
ISN Sclero Forums Manager
ISN News Manager

ISN Hotline Support Specialist
ISN Chat Host
International Scleroderma Network (ISN)


#7 Amanda Thorpe

Amanda Thorpe

    Platinum Plus Member

  • ISN Senior Support Specialist
  • PipPipPipPipPipPipPipPipPipPipPip
  • 2,927 posts
  • Location:U.K.

Posted 11 December 2010 - 06:48 AM

Hello Kelsie

Welcome to the forums! I look forward to hearing more from you so take care and keep posting.
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)

#8 debonair susie

debonair susie

    Platinum Member

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

Posted 11 December 2010 - 07:46 AM

Hi Kelsie,

I also, would like to take this opportunity to welcome you as a member of our Scleroderma Family.
You will "meet" awesome folks here, some of whom share some of what you are experiencing; others (of us), who may not, but will offer up emotional support.
A common thread that runs throughout our community, is the fact that each of us has been or are, where you now find yourself.

Please rest assured...Thanks to the ambition of many, there is a greaat deal of information in "our" site's library, as well as the medical section. You will not want for great information in either place, as long as you "stick with us" :emoticons-yes:

In the meantime, I wish you well in getting established, as soon as possible, with a rheumatologist, as well as a dermatologist. It seems, through your description, that each specialist may serve you well, at this point. (Hopefully, your general practitioner will be expeditious in getting you set up, in this regard)!

I look forward to your future posts, Kelsie!
Special Hugs,

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

#9 Sweet

Sweet

    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPipPip
  • 2,892 posts

Posted 12 December 2010 - 05:18 PM

Hi Mopsy!

Welcome to the forums! I'm really glad you've joined our family! :flowers:
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#10 Snowbird

Snowbird

    Platinum Member

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

Posted 13 December 2010 - 02:14 AM

Hi Kelsie

You've come to the right place for answers...welcome! It's always frustrating in the beginning when you are searching for answers. It sounds like your mom is very involved so you're likely not dragging her anywhere she doesn't want to go. ;) She'll be a huge help, I'm sure.

If you provide your general area, the ISN Team can provide a list of Scleroderma Specialists (which are also rheaumatologists). It would be good perhaps to bring that to your general doctor so you can get the right referral?

I really like your site name of Mopsygirl!
Sending good wishes your way!

#11 epasen

epasen

    Silver Member

  • Members
  • PipPipPipPip
  • 233 posts
  • Location:Lohja, Finland

Posted 13 December 2010 - 07:05 AM

Hi Kelsie,

Welcome to the forums. :) If you need any youth perspective on the matter feel free to hit me with a message or two. I've also had this condition since 1996 and I'm now 20.

I can assure you've definitely come to the right place.

Take care,
Emmi

#12 Shelley Ensz

Shelley Ensz

    Root Administrator

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPip
  • 3,275 posts
  • Location:Minnesota

Posted 13 December 2010 - 07:18 AM

Hello Kelsie,

I'm just dropping by to welcome you to Sclero Forums. I hope that a scleroderma expert will be able to clarify things for you!
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.

#13 mopsygirl

mopsygirl

    Bronze Member

  • Topic Starter
  • Members
  • PipPip
  • 17 posts

Posted 13 December 2010 - 10:31 AM

Wow! Thank you everyone for your warm welcomes! I definitely feel like this is a place I will be able to turn to for support when I'm down, and a place where I'll be able to share good news as it comes.

I'm a bit depressed at this point, and I'm having a tough time waiting out the days until my appointments. I guess the anticipation about what comes next is what I'm dealing with...