steph-anne

Just Diagnosed

9 posts in this topic

hi,

 

i am 28 and was just diagnosed with CREST this week, but the doctor suspects I have had it for the past year and a half though I was wrongly diagnosed as having only a UCTD. Now I am having tests run and the fingers on my left hand have been curling inwards and the doctor believes I am showing thee first signs of systemic scleroderma.

nit sure what I am looking for in posting this, just thought I might as well introduce myslef.

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Hi Steph-anne,

Welcome to the forums! I am glad that you have found us and joined in, just sorry it is because you have been diagnosed with CREST. You will find everyone here very warm, supportive, friendly and encouraging. And, we are all wiilling to share information and advice with you when we can. I don't know if you have read much about CREST, but if not, here is a link from our Sclero A to Z website with information about CREST.

Again, welcome!

Warm wishes,
Heidi

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Hi,

Welcome. I am sorry about your diagnosis, but you will find great support here. I just found out in December that I have CREST. If you want to ask any other questions you can email me and I can tell you all the things I have been through so far. Take care!

Nan :D

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Steph hello! I have CREST too. I was diagnosis years ago though. You will get alot of good information on here. Glad you had joined. Take care and ask away. Sam


Sam

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Hi Steph-anne ,

Welcome to this group. You will learn a lot here and be able to go back to your doctors with useful information. My son is 18 and diagnosed with sine Scleroderma last Dec.

Take care, Everyone.

Margaret

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Hi steph..anne

 

Welcome to the best support group you can get. Im sorry that you have been diagnosed with CREST and I guess you are feeling a little frightened and confused at the moment, I know I did when I was first diagnosed nearly two years ago now. You will find this place a wealth of information and the support from others, who know what you are going through, invaluable.

 

May you find peace in your heart and please post whenever you feel the need to off load your troubles, frustration and also happy times.

 

Sincere regards

 

Giorgigirl

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Hi Steph-anne,

 

Welcome to the Sclero Forums!!! I'm so glad you have found us. I'm sorry about your recent diagnosis. You will find so much information, support, friendship, and a whole lot of understanding here! Post when you can, ask any questions you have, you will love it here.


Warm and gentle hugs,

 

Pamela

ISN Support Specialist

International Scleroderma Network (ISN)

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Hi Steph-anne,

 

It's always good to introduce yourself here, and most of us probably didn't have a clue what we were looking for at the beginning either. It's good to read the posts so you know you're not alone, there's good info on meds and other treatments, and whenever questions come to mind there's always someone to put in their experience. Sorry about the diagnosis, but at least you've found the right place to connect with others!

 

Best wishes to you,

 

Elehos

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Steph-Anne,

I urge you to ask your Dr. to order OT. I also ahd selling and the beginning of hand curling. I also have flexability issues(becoming difficult to raise arms with curling iron, etc. I had her order "PT/OT - consult and treat". Incase you don't know PT is physical therapy and OT is occupational therapy. Apparently, OT is any problem from the elbow down and also for ADL'S(activities of daily living - such as if you had problems dressing, bathing, etc. I was primarily interested in learning exercises to keep my hand flexible and exercises to increase my flexibility as I assume I will need to incorporate this in my daily life. My OT was not familiar with Sclero on my first visit, but educated himself by my 2nd visit. I currently have a list of hand exercises and massage exercises which have helped greatly. Don't let your hand become anymore dibilitated before you take action. Good Luck.

Jgo7,

So sorry to meet you under these circumstances, but this is a great place to be for education and support. I know it is hard especially in the beginning, but try as Shelley said to take one day at a time.

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