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Newly Diagnosed...sort Of


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#1 ElizaJ

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Posted 26 December 2006 - 03:45 PM

Hello to everyone. I was diagnosed in September 2006. I am still new to all this. I have Scleroderma, OA, Fibromyalgia, and Syringomyelia as well as Generalized Anxiety with Deppression. Most of the sclerderma is inside involvement. I have some skin involvement the doctors call morphea. I have something called Sjorgen's too in my eyes and mouth.

I came here in hopes of finding knowledge, support, and information. Support mostly as I am learning more about this stuff and myself than I think I really wanted to know.

For now, I dont have too many questions. I just wanted to introduce myself and try to find support. I get so scared sometimes because I do not understand all that is happening and this gets the anxiety and depression flowing and it is a vicious circle.

Thank you for taking time to read this.

#2 Heidi

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Posted 26 December 2006 - 03:55 PM

Hi Eliza,

Welcome to the forums! I am so glad you have found us, but sorry it is because of all your diagnoses. As you read and get more information, it can be very overwhelming. The most important thing to remember is that ALL of these diseases effect each of us so differently. Thus, just because you read about one thing happening in one person or another, DOES NOT mean it will happen to you! Please try not to worry (I know, easier said then done) as you are so right in saying it just creates anxiety AND stress and anxiety only exacerbates these diseases!

I don't know if you have read the information on our Sclero Main Medical Directoryweb page, but there is great information there about morphea, sjogrens, and fibromyalgia. Just please take it all in stride and don't think that everything you read is going to happen to you.

Again, welcome! I hope you will come and post often and let us know if you have questions or would like some specific input or advice. I am sure you will find everyone here very supportive and encouraging and willing to give information and advice when we can.

Warm wishes,
Heidi



#3 ElizaJ

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Posted 26 December 2006 - 04:06 PM

Wow!!! I did not expect such a fast and wonderful response. Thank you so much for a nice welcome. I will be back as often as possible. I am trying to learn so I can help myself and not be scared half to death. Thank you for the links that will help alot. This is a frightening disease. It is one thing to see what is happening to you but to not be able to see it, worries me silly.

Anyway, thanks again Heidi. Bless you.

ElizaJ

#4 janey

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Posted 26 December 2006 - 05:42 PM

Eliza,
Welcome to the forum! I'm sorry to hear of your recent diagnosis and your other health problems. Yes, it can all be quite overwhelming, so take your time and when you think you've had enough information for a while, then you probably have. Take a break and come back again only when you're ready. Heidi has provided some great links from which you'll learn quite a bit - just take your time.

Again Welcome to the forum! Please visit us often.

Big Hugs,


Janey Willis
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#5 Sweet

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Posted 26 December 2006 - 07:27 PM

Hi ElizaJ!

Welcome to Sclero Forums, we are so glad to have you here. Looks like Heidi and Janey already gave you some great links, so I will just welcome you. I also wanted to tell you how sorry I am for all of your diagnosis, wow you really got the double if not quadruple whammy didn't you? *hugs*

You will find some great people, information and support here. We look forward to getting to know you.
Warm and gentle hugs,

Pamela
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International Scleroderma Network (ISN)

#6 LisaBulman

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Posted 27 December 2006 - 03:21 AM

Hi ElizaJ!

Welcome to the Sclero Forums! You certainly have a lot to deal with no wonder you have anxiety and depression. I have a question.... what is causing the Syringomyelia? My daughter has Chiari Malformation and tethered spinal cord so she has MRI's every year to watch out for this as well.

We are all here to support you and answer questions. Please come and post often!

Hugs,
Lisa
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#7 ElizaJ

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Posted 27 December 2006 - 05:57 AM

Hi Sweet and LisaBulman:

Thanks for the wonderful welcomes. Y'all have been so nice. I feel very glad to be here!! I plan to visit everyday. The hugs are awesome I sure need them.

Lisa, the syringomyelia, my nuerologist believes that it was caused by the daily physical abuse I received as a child for many years (my back was a involved). Then when I was 18, I was rear-ended by an 18 wheeler and that furthered it, also brought it to the forfront. By the time I was 38 and had had two children, it was really starting to cause problems. Just thought it was disc herniation and nothing else. When I started losing control of some of my bodily functions, I went back to neuro and he did MRIs and found it that time. I have MRIs yearly to keep a check on the progress.
I am sorry for your little girl, I will keep her in my thoughts.
Thanks again for the warm welcomes everyone.

ElizaJ

#8 PAULINE

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Posted 27 December 2006 - 06:25 AM

Hi ElizaJ,

I to am sorry to hear about your illness getting you down. I have dss and most mine is internal also with some tighting and swelling in my skin. I to get depressed but my meds help alot for that, but most of all the forum friends pick me up the most. Stay close to the forum and the help will just flow to you everyday and make you strong. I wish you nothing but the best ElizaJ!


BIG HUGGS,

Pauline Huggins

#9 ElizaJ

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Posted 27 December 2006 - 10:28 AM

Thanks a lot Pauline!!! I have a lot of questions but am not sure which to ask first or if I should wait until I am done with my next rheumatologist appointment and see what she has to say about it all. Take care everyone and hugs to you all!

#10 PAULINE

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Posted 27 December 2006 - 05:52 PM

Dear ElizaJ,

You can ask any questions you want here at the forum and you will feel better about it. Some of the questions that stick in your mind the most write them down and take them with you into your next rheumatologist appointment because if you are anything like me I get in there and totaly forget half of my questions I wanted to ask. But it's nice to hash it out here with everyone else with the same issues. When is your next rheumatologist appointment? let's us know how it goes.

HUGGS,

Pauline Huggins

#11 nan

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Posted 28 December 2006 - 01:09 PM

Hi Eliza,
I too have Fibromyalgia and Sjogren's and I just found out that I have CREST. You have definitely come to the right place. There is a wealth of information on this site and a great deal of support!
Nan

#12 barefut

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Posted 29 December 2006 - 10:45 AM

Welcome Eliza,

So sorry to hear about your diagnoses. You have come to the right place for information and support.

Try not to read too much too soon - easier said than done when you have so many questions, I know.

I found it more helpful to read about people's experiences here than to read too much of what's out there online, even though it is good information - too much too soon is not good.

Ask away too, so many knowledgable, experienced, educated people here to help you out. (though I'm not one of them! :lol: )

Glad you found us. Take Care,
Barefut

#13 ElizaJ

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Posted 30 December 2006 - 02:00 PM

Thanks Nan and barefut, I really need the kind words.

I was wondering about something that has been bothering me alot. I just went for annual eye check and the doctor said my vision had changed and I got new glasses, eeewwww bifocals!!! Anyway, she also diagnosed my Sjorgen's. What I was worried about though is that it seems my eyes have gotten worse, more blurriness. I can't see a darned thing clearly even up close! I know that with Sjorgen's the eyes are dry and so is my mouth, but does all the other stuff come with Sjorgen's? Also, will punctal (sp) plugs help my eyes enough for me to go get them? Will it help with the blurriness? My eye doctor suggested the plugs but was not sure. All this new stuff is scaring me silly. I have not been able to take medication either for fear of a reaction to it. Anyway, I would appreciate any info on the plugs. Thanks again!