Jump to content


Congrats to Margaret, Platinum Member with 1,000 posts and 10 Years of Forums Membership!


Photo

My name is Marissa


  • Please log in to reply
13 replies to this topic

#1 Marissa23

Marissa23

    Newbie

  • Members
  • Pip
  • 2 posts
  • Location:Modesto. CA

Posted 11 March 2010 - 07:12 AM



Hi my name is Marissa. I and 23 and live in California. I just got a positive test for Scleroderma yesterday. No too sure exactly what it is but I want to know everything about it. I am kind of still in shock I guess you can say. I have Raynaud's pretty bad, swollen fingers every once in awhile, hand, fingers, ankles, and Jaw pain. I am having surgery on my jaw next month to wash it out. I can barely open my mouth. Well that is a little about me and where I am at with all this so far. I look forward to hearing from other people.

#2 Jeannie McClelland

Jeannie McClelland

    Senior Gold Member

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

Posted 11 March 2010 - 07:57 AM

Hi Marissa,

Welcome to the Forums. We're a friendly bunch, sympathetic and definitely understanding. Posted Image

I'm sorry you found us because of your diagnosis, but very glad you did so. We strive to make sure we have the most current and accurate information on the main website and here on the Forums, our group experience is vast. When I was first diagnosed, I found the personal experiences our members shared very valuable in sorting out the likely/not likely/worst case scenarios. There is what seems like an enormous amount of frightening articles about scleroderma on the web and it can be hard to figure out what might apply to oneself and what probably won't.

Have you got any immediate questions? Any problems negotiating the site? I hope you'll post often and let us get to know you.

Warm wishes,
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

#3 Marissa23

Marissa23

    Newbie

  • Topic Starter
  • Members
  • Pip
  • 2 posts
  • Location:Modesto. CA

Posted 11 March 2010 - 10:00 AM

Thank you for the warm welcome. I am glad there is a place like this I can turn to for support and friendships. Can you tell me a little bit about what you have gone through. How old were you when you found out? I kind of just want to know what to expect. My doctor said my Vitamin D was really low too. To you have a suggestions on vitamins or anything like that. What stuff do you do to help with your symptoms? I look forward to hearing from you. Thanks and it was nice to meet you.

#4 Sweet

Sweet

    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPipPip
  • 2,892 posts

Posted 11 March 2010 - 01:41 PM

Hi Marissa and welcome!

So very glad you've joined us, but sorry it's due to your recent diagnosis. You've come to the right place for support, information and friendship!

Look forward to knowing you better.
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#5 Margaret

Margaret

    Platinum Member

  • Members
  • PipPipPipPipPipPipPipPipPipPip
  • 1,002 posts
  • Location:Pennsylvania

Posted 11 March 2010 - 02:22 PM

Hi Marissa ,

Welcome to the group. I want to let you know that my son was diagnosed with sine Scleroderma, 3 years ago, at age 18. It was later changed to UCTD after being put on Plaquenil and his symptoms diminished. He, too, had a really low Vitamin D level and takes 1400 iu/daily. Your mouth issue sounds very painful --- what are they 'washing out?' Everyone here is great and a wealth of information. Don't be afraid to ask questions.

Take care, Everyone.
Margaret

#6 warmheart

warmheart

    Silver Member

  • Members
  • PipPipPipPip
  • 109 posts

Posted 11 March 2010 - 02:48 PM

Hi Marissa,

And welcome! I've had limited (almost sine) scleroderma for 10 years now. It was a bit of a challenge adjusting over the first couple of years (shivering cold spells, swallowing problems, weakness in my arms and hands), but over time I did adjust and now all that feels pretty normal for me. Everybody's different, of course! My dentist had trouble prying my mouth open wide enough for a few years, but then the problem resolved itself. What kind of surgery are you having on your jaw? Hopefully it won't have to be too extensive.

Hugs,

warmheart

#7 Amanda Thorpe

Amanda Thorpe

    Platinum Plus Member

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

Posted 12 March 2010 - 11:30 AM

Hello Marissa

Welcome to the forum, you've already had some great replies!

I'm into my 3rd year with diffuse scleroderma and the one thing I can tell you is that eveybody's journey is different and never boring! I was diagnosed at age 39 after 6 months of rapidly progressing skin involvement that left me barely able to walk. That has improved now but things have gone internal instead, oh well you win some...

What test did you have that confirmed scleroderma?

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 sarasmile

sarasmile

    Bronze Member

  • Members
  • PipPip
  • 14 posts
  • Location:Atlanta, GA

Posted 30 March 2010 - 05:58 AM

Marrisa,

I just turned 23 and was told in October that I probably have Scleroderma (I then went to a Rheumotologist who is still attempting to finalize a diagnosis, but she is convinced that it's autoimmune). I definitely can relate to your feelings of shock.

I don't have any visible Raynauds, but I do suffer from joint and muscle pain/weakness, fatigue, shortness of breath, heart palpatations, etc. I've struggled with many of these symptoms for awhile, but only recently discovered some doctors who take me seriously. (Often I would hear that I was too young to have any of these types of symptoms or that I just must be stressed).

As you seem to be, I was definitely very curious about other people diagnosed with Sclero at around the same age. I hope your sugery went well. Keep us posted!

-Sara

#9 kaykay

kaykay

    Senior Bronze Member

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

Posted 30 March 2010 - 09:49 AM

When I first was diagnosed (UCTD then) my vit D was super low - the Doctor prescribed 50,000 units weekly (was much cheaper than buying OTC) it made a WORLD of difference -
take care

#10 susieq40

susieq40

    Silver Member

  • Members
  • PipPipPipPip
  • 129 posts
  • Location:Montana, USA

Posted 31 March 2010 - 07:56 AM

Welcome Marissa,

So sorry you have this disease so young. I too have had symptoms for years, and they never put it together until last year. Only because all the sudden I was having breathing problems, and couldn't keep up with my kids. I am now 42, going to be 43 shortly. I was diagnosed with other diseases young, that can be connected to Scleroderma. Like Reflux disease, Inflammatory Bowel Disease and Rheumatoid Arthritis, Raynaud's (blue fingers and feet). They never thought I could have so many diseases/problems until the lung problems showed up and said..HELLO PAY ATTENTION!! DO SOMETHING!! I too have very low vitamin D. Get a prescription, it's cheaper for the volume you need to be on, and less pills to take. I was in total shock of the diagnosis of Scleroderma. But since mine is mostly internal it was harder to diagnose. Please do come here often! Lots of good support and new friends to make! Warm HUGS! Can't wait to get to know you better. I'm a mom of 5, live in Montana, and love to paint and scrapbook. :bye:

susieq40

#11 pduckworth

pduckworth

    Newbie

  • Members
  • Pip
  • 1 posts
  • Location:Hamilton, Ontario Canada

Posted 09 April 2010 - 05:43 PM

HI WARMHEART,

I was just diagnosed today with sine scleroderma. I would love to hear your story, what you are doing now and types of medications.

Thanks very much,

slainte

#12 Amanda Thorpe

Amanda Thorpe

    Platinum Plus Member

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

Posted 10 April 2010 - 06:55 AM

Hello Pduckworth

Welcome to the forums! Was the diagnosis a bolt out of the blue or an expected possibility and how are you handling it? It can take awhile to sink in, we have a page about emotional adjustment that you may find helpful. Have a look around the site because we have loads of information from news articles to personal stories.

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)

#13 Sol R.

Sol R.

    Newbie

  • Members
  • Pip
  • 3 posts

Posted 10 April 2010 - 01:32 PM

Hi Marissa!

I'm Sol, I'm 22, living in Toronto, and I got diagnosed with scleroderma last year. I'm sorry for your diagnosis, it can really be a bit of a rollercoaster at times. I'll just start by suggesting that you don't go Googling it around, because some of the cases are not exactly comforting and it tends to be different for every person.

I definitely can relate to the Raynaud's: some days it seems like it's triggered by almost anything but it's not too bad if you don't get digital ulcers (I do though, and they're literally a pain.) Usually my joints don't hurt except for my right knee as of recently, but when they do, it's usually my hands and feet, due to the cold (Toronto's winters + Sclero= not the best combination). As for your jaw, I really can't say much on that, but I really hope the surgery goes/went well and is able to relieve the pain.

Keep posting and stay strong, I look forward to hearing from you!

Hugs,

S.

#14 warmheart

warmheart

    Silver Member

  • Members
  • PipPipPipPip
  • 109 posts

Posted 12 April 2010 - 01:31 PM

Hi Pduckworth,

And welcome to the forums! Sorry it's taken me so long to answer; I just saw your post now. I'm sorry to hear about your diagnosis. I guess I don't technically have sine scleroderma because I do have some minimal skin involvement, at this point just a little skin thickening and tightness in my fingers. It all started for me about 15 years ago with stiff numb hands and joint pains (and also Raynaud's, looking back), but I refused to see a rheumatologist, which was pretty dumb in retrospect. Then about 10 years ago I suddenly started getting horrible heartburn 24/7, and within a few more months I suddenly had trouble swallowing. Turned out that my esophagus was (still is) paralyzed and dilated. And I also had weakness and numbness in my hands, and weak shoulders; I was pretty clumsy for a couple of years there. Anyway, to make a long story short, fast forward 10 years, I can eat anything and force it down (even big horse pills), and the weakness in my hands and shoulders is a lot better. It's really not much of an issue anymore. I finally saw a rheumatologist for the first time, who's a scleroderma specialist and he's great. Right now I'm in the middle of having my lungs re-evaluated, but I think everything will turn out OK. Everybody's different, but I feel very lucky to have done as well as this all these years. I just take PPIs for reflux, and Vitamin B12 because I can't absorb enough from food anymore. My fingers get swollen and tight, but hopefully that will be the extent of it.

Feel free to ask anything. But what about you? How were you diagnosed?

Slainte (in good health),

warmheart :bye: