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Hi! I'm also new!

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#1 amberjolie


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Posted 11 August 2009 - 11:53 AM

This'll be long, but I guess I just really want to be able to tell someone who will understand what's been going on, and see if everything sounds consistent or not.

Last October, I started getting ulcers on my fingertips - at first, thought it was from a cut I got, but then it went through the other fingers - got a blood test in January, and they found a positive ANA - 1:640, speckled & nucleolar. That's when I first heard the term scleroderma from the doctor as a possibility. He sent me for more bloodwork to look for specific antibodies, and that's when everything, and I mean everything, came back negative, including the ANA again!

So I was feeling kind of happy that maybe that wasn't it. But he was going to send me to a rheumatologist anyway. The ulcers kept moving through each of my fingers so he gave me more bloodwork - ANA positive again, 1:640 again, nucleolar pattern. Then he put me on nifedipine and it really helped the ulcers go away.

But by then, the second positive test with the pattern it had, plus the fact that I was starting to realize that it was getting slightly more difficult to swallow, and my muscles were getting tired more easily than they used to, made me feel that it must be scleroderma.

And then I was getting such terrible heart palpitations and was short of breath, so the doctor sent me for a heart ultrasound and halter monitor test, but everything came back okay.

In June of this year, I saw the rheumatologist who said it was CREST syndrome, so I was somewhat relieved that it at least was the somewhat limited kind. And he said I could go off the nifedipine in the summer (which reduced my palpitations). But I mentioned the shortness of breath, so he got me set up with a doctor that specializes in lung & heart issues (not quite sure of the term of his specialty). So far I've had a cat scan and echocardiogram, which the day afterward the rheumatologist told me to go back on the medication (which is used also for pulmonary hypertension, so I'm figuring I must have it, although I have to wait until the end of August to see the other doctor to find out for sure). Still got a stress and breathing test coming up.

But now the light's going on, like I've had symptoms of things for literally years, and never thought anything of them, but am now putting them together. I've been fatigued since high school, and had a positive ANA about 8 years ago but without any other symptoms, they didn't feel it needed to be looked into further. I've realized that my swallowing has been slightly difficult for years, and that working out has made me dizzy afterward for a very long time. And I was particularly short of breath during my pregnancies, but I just figured it was low blood pressure (the blood pressure in the rest of my body is typically on the lower side and got very low during pregnancy). So I'm thinking I've had this for a long time, but only now has it gotten bad enough that things could be put together.

My hands are now starting to feel stiff in the mornings, and I find my chest hurts a lot - either heartburn or not (the "not", I wouldn't be surprised if it turned out to be pulmonary hypertension).

Anyways, sorry for the rambling, but just wanted to finally tell my story to someone. Oh, and a quick question - I also just realized that I get migraine "auras" sometimes - dancing colours and shapes in front of my eyes, but no headache afterward - does anyone else get this, or is this just an unrelated thing?

Thanks for listening!

#2 amberjolie


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Posted 11 August 2009 - 12:01 PM

Oh, also forgot to mention - my mouth seems to get dry easily, and my hands are super dry now, even in the summer. I also have a patch of really dry, almost callusy skin, on the top of my foot - not sure if it's related or not - the rhumatologist says no, but it seems too coincidental.

#3 Shelley Ensz

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Posted 11 August 2009 - 02:56 PM

Hello Amberjolie, and welcome to Sclero Forums!

I'm glad you've joined us and soon many of us will be pitching in with greetings for you, I'm sure. It's really hard for most of us to tell exactly when we started becoming sick. I'd guess that many of us would put a different start date on it, than our doctors would. Some of the symptoms are just too vague and could be attributed to other things. So we'll wait along with you for the results of all your tests, and send best wishes your way.
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.

#4 Angel Sky

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Posted 12 August 2009 - 03:37 AM

Welsome Amberjolie!!

I am new too! Just joined the forum a few days ago. I know how you feel!! I was misdiagnosed
for 5 years with RA instead of Scleroderma. I have new doctors that seem to know what they're doing for a change. Make sure you get second opinions and make sure to ask questions. I hope you have
some good support at home. Good Luck and take care!!

Angel Sky

#5 Cheryle


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Posted 12 August 2009 - 03:57 AM

Welcome to our forum. I'm glad you are getting lots of tests done, so the doctors can see what all is going on with you.

I also have CREST along with a few other autoimmune diseases. I have it as CrEsT ... (capital letters being the ones I have symptoms of) Which letters (symptoms) did the doctors diagnose you with? Were your finger ulcers from Calcinosis?


#6 Jeannie McClelland

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Posted 12 August 2009 - 05:05 AM

Hi Amberjolie,

Welcome to the Forum!

Isn't it great to have a diagnosis at last? It doesn't completely remove all of the questions, but wow, having a firm starting point at last is so good. I hope we can answer your new questions as they come up, or at least steer you in the right direction. Good luck with your tests!

Best 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

#7 amberjolie


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Posted 12 August 2009 - 10:41 AM

Hi everyone, and thanks for the welcome! To answer Cheryle, I would currently have cREst, appearing like maybe it's becoming cRESt, with the stiffness I'm getting in my fingers. Or is the stiffness different from sclerodactyly, since I'm not getting shiny skin, but I do notice a reduction in flexibility in my one hand in particular? The ulcers were from Raynaud's. I don't currently have calcinosis.

As for support at home - I have as much as my husband is able to give. He was actually diagnosed with a completely different autoimmune disorder about 15 years ago or so - ankylosing spondylitis (what are the odds we'd both have something?!!) so I've been the one playing "nurse" for the last while, giving him his injectible medication and so on. But so far I haven't needed much support. I hope it'll stay that way, at least until the kids are old enough to be more self-sufficient.