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#1 Scarlett



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Posted 19 March 2010 - 02:27 AM

Hi Everyone,

I actually joined the Forums quite awhile ago, and have been "lurking".

I have had numerous symptoms since 2000-2001, beginning with dysphagia, Raynaud's, muscle pain...

20 something doctors (Gastro, ENT, Cardio, Swallowing Centers) later I finally made an appointment with a Rheumatologist and got a diagnosis yesterday of CREST Syndrome with overlapping Scleroderma (my insurance changed and is now Open Acces, used to need a referral from primary care physician).

I have had a feeling that this is what I have for probably 3-4 years now. My primary care physician did an Sclero blood test about 3 years ago which came up negative, so he pretty much dropped it.

Forward to a few months ago...growth on skin had to go to Dermatologist, during
body exam he noticed "shiny" skin under/around jawline and red "capillaries" in my face which brought Sclero back up.

Sorry if I am jumping around. Even though it was expected; am still kind of in shock, feel like crying and screaming and calling all those past doctors and giving them a piece of my mind.

Anyway, just wanted to introduce myself.

#2 Shelley Ensz

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Posted 19 March 2010 - 04:38 AM

Hi Scarlett,

Welcome to Sclero Forums! Well, actually you've been here awhile now, so I should say, good for you to finally post your first message. With any luck you will inspire a lot of other lurkers to do the same.

(You lurkers know who you are, if you've been reluctant or scared to post, now is your big call to action; if Scarlett can do it, so can you!)

I'm sorry you went through such a long and difficult diagnosis. Many or even most of us have "been there, done that" since it takes a (dismal, and uncalled-for!) average 6 years for women to be diagnosed in the U.S. So you are way ahead of the curve!

And we know how it goes emotionally, struggling with emotions about those who misdiagnosed or undiagnosed us all along the way. Should we write them, forgive them, try to understand them, let it go awhile, move on to help raise awareness for others overall, or deal with it right now?

But at the same time, there is a wonderful sense of, "Yippee! I was right all along; I'm not totally nuts, this isn't all in my head, thank goodness I finally have some answers and have an idea of what I'm up against now!"

So to cover you on both ends, we'll do a little head-bashing for the past doctors and long wait: :emoticon-bang-head:

And some great big flowers to celebrate your diagnosis, at long last: :flowers:
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.

#3 Sheryl


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Posted 19 March 2010 - 04:38 AM

Scarlett, welcome to the ISN forums. I am glad you decided to write and be a part of the forums. As you have been reading you can see how doctors don't give out diagnosis' lightly. They also need to watch and see what transpires. Many things develop and head in different directions so a different diagnosis would be in order. Sometimes Insurance companies may drop a person if they have an illness such as Scleroderma. Doctors don't want that to happen so they wait as long as possible to have to put the words to paper for insurance reasons. You would still receive the same treatments as they occur because that is the doctors job to give you proper treatment. Sorry to see that you have joined our ranks with the issues you are dealing with but, I am really happy you finally got a diagnosis. Keep us informed on your treatments. Welcome aboard.
Strength and Warmth,

Sheryl Doom
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International Scleroderma Network (ISN)

#4 Sweet


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Posted 19 March 2010 - 05:45 AM

Welcome Scarlett!

I'm glad you've decided to dive in, and post. A lot can be gathered from "lurking" but you'll feel more connected now that you are posting.

Sorry for all that you've been through, but now that you know "what it is", maybe that will help you work through some of the anxiety and emotions that come with not really knowing whats going on.

Looking forward to knowing you better. :flowers:
Warm and gentle hugs,

ISN Support Specialist
International Scleroderma Network (ISN)

#5 Jeannie McClelland

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Posted 19 March 2010 - 06:35 AM

Hi Scarlett,

Thanks for coming out of hiding! We aren't really such a scary bunch and although being an 'open' member probably makes the diagnosis feel more real, the only things that have changed are pretty positive! Let's see, you've got lots of new and understanding friends. You've got a diagnosis which means you can move on to devising a treatment plan and gathering your own team of experts who do have a clue to what's going on.

What's really good about it though, is that you can now look at all the information available with an eye to the successes, not just the frightening bits. There is a constant stream of good things coming out of the research field: better understanding of autoimmune diseases, better diagnostic and screening procedures for the complications which can occur, better treatments with fewer side effects, and even a much better picture of when to treat and when to wait. I guess if you have to have it, now is a good time to have got it! Posted Image

So warm wishes and we'll all look forward to hearing more from you.
Jeannie McClelland
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International Scleroderma Network

#6 Scarlett



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Posted 20 March 2010 - 02:51 AM

Thank you all very much for the warm welcome. :)

I guess I should have gone to a Rheumatologist a long time ago, might have saved me years of aggravation. This was my first visit to one, and she asked me 4 or 5 times, "No one ever told you to see a Rheumatologist?". She seemed dumbfounded.

Will keep you up to date on what is going on. :)

I am a pretty quick study, so hopefully I will get to the point soon where I can offer some
help to others.

The next two weeks appointments for the PFT, chest X-ray/CT, Echocardiogram, and labs. She wanted to start me on Steroids right away, then rethought it and said she wants "clean" labs.

Again, thank you all so much!

#7 warmheart


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Posted 20 March 2010 - 07:24 AM

Hi Scarlett,

Welcome to the Forums! I was a lurker for quite a while too and only came out of the shadows when I knew I had to ask for help. Which I got in spades, and I'm so very grateful.

I'm sorry too that you had to go through all that. My story was somewhat similar in that it took 10 years to see a rheumatologist at all. I'm not a doctor person, so I pretty much only saw my primary care physician. Fortunately (I guess) my diagnosis was clear-cut only because of obvious esophageal involvement, though I was never 100% sure of my facts until the diagnosis was confirmed by my rheumatologist, who's a sclero specialist.

BTW, there's no law that says you have to an "official" diagnosis of scleroderma in the chart in order to be treated and monitored, even if your rheumatologist is a sclero specialist. And as Sheryl said, there are good reasons to keep it vague.

Take care,

warmheart :bye:

#8 debonair susie

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Posted 20 March 2010 - 08:30 AM

Hi Scarlett,

I only wanted to welcome you to "Our Family". Shelley, Sheryl, Sweet and Jeannie ALL spoke to your concerns so WELL.

Sheryl mentioned the insurance concern that doctors often bear in mind, so please don't dispair! It may be that you weren't in a "Scleroderma Flare" at the time the lab work was done, which would indicate a negative result.

Just hang in there...I was four years, tests "a'many and doctors alot"...before I began to receive diagnoses.
Hopefully your fears have been somewhat allayed, now.

Please, keep us in the fold, okay?! Okay!
{{{Soft, soft hugs}}} for you!
Special Hugs,

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

#9 enjoytheride


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Posted 20 March 2010 - 06:02 PM

You know the old saw- if you hear hoof beats coming up behind you, you think horse. not zebra. Scleroderma is when the zebra is the one who shows up. So many of the symptoms of scleroderma are similar to other problems that it may not be clear what is really the problem. There are no clear cut tests that say you have it.
And there is a belief that nothing can be done about it- even my current rheumatologist told me she had a relative with it and she personally has not checked her own symptoms as she doesn't want to know. Not reassuring to me. And I don't think totally correct- there is no cure but there are many things that can help with the various problems.
Hang in there- I still have bouts of panic but I certainly don't feel as hopeless as when I had all these things happening, and felt no one believed me and no one actually did anything to help. Having a diagnosis is very helpful to getting the right meds and treatment.