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Officially diagnosed

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8 replies to this topic

#1 LMS


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Posted 19 June 2008 - 11:13 AM

Hi Everyone,

My rhemy diagnosed me this week. Eventhough, I have the centromere pattern she said my symptoms are behaving more like diffuse. I am being started on plaquenil and physical therapy. My pulmonologist diagnosed me with pulmonary hypertension which will be confirmed by right heart cath. They both seem very optimistic. I know PH isn't the death sentence it used to be but the research states the combination of Scleroderma and PH leads to a poor prognosis. Thanks everyone.


#2 Shelley Ensz

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Posted 19 June 2008 - 12:43 PM


My congratulations and sympathy on your diagnosis this week. It is such a catch-22...great news, you know what you have, bad news, it's scleroderma (and in your case possibly PH too.) If it is so advanced that you have PH, I'd hazard a guess that you've actually had this quite awhile?
Warm Hugs,

Shelley Ensz
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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.

#3 nan


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Posted 19 June 2008 - 01:46 PM

I am so sorry for your diagnosis, but I do know there is treatment for your problems. When I first found out that I had scleroderma it was surreal. My thoughts are with you as you start on this journey. I was so relieved to finally have a diagnosis, but I just wished it could have been something else. You have come to a great place for support.
Take care,

#4 debonair susie

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Posted 19 June 2008 - 04:05 PM

I hope the Plaquenil helps you and the physical therapy is of benefit to you too, LMS.

I am so thankful that there is so much more known about Scleroderma than used to be.

Take care of yourself and keep on posting!

Special Hugs,

Susie Kraft
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International Scleroderma Network (ISN)

#5 truman


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Posted 19 June 2008 - 07:42 PM


I know it seems a big diagnosis to deal with; not seems, is, given time it becomes actually something to be able to cope and live with. As I've said in many posts here, my first and only reaction was denial to the outside world, friends, family and myself.

Recent events have certainly prevented any more hibernation, but through the last year I have been openly honest with everyone, explaining as much as I could so they could understand. I cannot tell you how many doctors and nurses I have educated. Just one today, said she's going on the web to research CREST. We really need to get the word out so more become aware. There are more of us than counted, just undiagnosed through ignorance.

This illness, like my divorce years ago, has stages of mind set. Denial, Anger, Fear and than finally a peace with it all. I think when you find that peace, is when natural healing can occur in a body because it's at it's most relaxed state.

We're always here, whatever phase you may be experiencing.


It is what it is...........

#6 Karenlee


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Posted 20 June 2008 - 01:51 AM


Although I'm sorry for your official diagnosis, you can now at least start your course of action with meds and proper testing to keep on top of things.
I started Plaquenil treatment about 8 weeks ago, and have seen some positive changes, as I am sure you will too. The one peice of advice I can give it please be patient with it, as it takes some time getting into your system.

Like Tru said, there are stages you go thru when first diagnosed. I think I skipped the denial and anger and went directly to fear, but that does subside once it sinks in. There are many here who are invaluably helpful with information and moreso, support and caring.

Ask anything at anytime. We're all here for you.


#7 Peggy


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Posted 20 June 2008 - 05:50 AM

I am so sorry for your diagnosis. I know how you feel. Now that you do know you can take the disease head on and do whatever it takes to stay ahead of it. There are so many more medications now that seem to help with sclero. I have gone through so many stages of what Tru was talking about. I think I'm still in the fear stage as the way I feel I know that I'm getting worse and I worry what I'm going to find out at my next appointment, which is Monday already. But then I go this website and I vent and then I feel better.

There are so many great people here to get great advice from. There is always someone who is going through something similar to what you are and are there to help.

Warm hugs,


#8 Sweet


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Posted 20 June 2008 - 08:32 AM


I'm sorry to hear about your diagnosis, although I know it's sometimes a relief to be able to put a name to the problem.

I'm confident your doctors will find a treatment program that will allow you to live the best life!
Warm and gentle hugs,

ISN Support Specialist
International Scleroderma Network (ISN)

#9 Snowbird


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Posted 20 June 2008 - 12:34 PM


I'm also sorry to hear of your diagnosis. This kind of news does give us a beating but like everybody said, we do eventually bounce back. It just takes a bit of time for us to digest that information but I think that's perfectly normal given our circumstances. I bypassed some of those emotions too and went straight to the fear as well. Like debonair Susie says...there is a lot more known about scleroderma now that can help.

Take care and keep posting, we're all here!!
Sending good wishes your way!