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Biomarker for Diffuse Scleroderma skin has been discovered!


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#1 KayTee

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Posted 17 January 2010 - 11:26 AM

Hi everyone: I was diagnosed last November with scleroderma CREST which I've probably had for years.
I had Raynaud's all my life but it suddenly got a lot worse with my fingers in serious trouble. After a sympathectomy it was discovered I am missing the arching part of the ulnar artery in both hands. I've got lots more finger problems along with a digital ulcer.
Anyway - I'm looking for a rheumatologist I feel comfortable with. I have a local appointment, but also know there is a research based scleroderma division at a hospital two hours away.
Any thoughts on how workable this is for the number of times I would need to go there, have tests etc?
I'm also a breast cancer survivor of 6 years.

Looking forward to virtual warmth.
KayTee
Kay Tee

#2 Jeannie McClelland

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Posted 17 January 2010 - 11:39 AM

Hi KayTee,

Welcome to the Forums! I'm sorry your hand problems have gotten significantly worse, that's a real shame.

As far as managing care with the scleroderma center being 2 hours away, your best bet is to make good friends with the scheduling department! I'm very close to a good center, but over the three years since I have been going there, I've overheard enough discussions to realize that if you work with the schedulers, you can often get a whole day filled with tests and appointments rather than having them spread out over a longer period of time. When that isn't possible (takes too long to get a test result to the doctor, for instance), you could also see about getting things scheduled over two consecutive days and find out which hotel/motel offers a 'hospital' rate. I have friends who live quite far from an urban area and they like to schedule Fridays for tests and Mondays for appointments and have a mini-break over the weekend for shopping, shows, etc. (Taking advantage of the hospital rates at the hotel, of course!)

Another option, of course, is to have a consulting relationship between your two doctors. See the experts periodically and the local fellow for routine care.

I know I'm spoiled having things in reasonable proximity, but I'm sure I echo most Forum members in thinking seeing the expert expert (not a typo) is worth the extra trouble.

Best wishes and all the virtual warmth I can send,
Jeannie McClelland
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#3 miocean

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Posted 18 January 2010 - 04:33 AM

Hi Kay Tee, It is well worth it to drive the distance and see a scleroderma specialist. I go 4 times a year so it is not that bad. I only have to go an hour and a half away and my husband takes me. We usually find a nice place to go out to lunch so it makes it a little bit fun.

I am sorry you have scleroderma but you will find a lot of help here. Welcome.

miocean
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#4 Amanda Thorpe

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Posted 18 January 2010 - 12:15 PM

Hello Kaytee

Welcome to the forum!

Seeing a sclero expert is always worth travelling for, mine's 1 1/2 to 2 hours away depending on traffic. Even though I live 5 minutes away from my local hospital I would never consider going there instead. Only today I was told by someone just diagnosed with scleroderma that their rheumatologist said limited sclero was nothing to worry about, no medication was prescribed and no tests had been arranged to check internal involvement. Thankfully the person in question now has an appointment with a scleroderma expert pending!

Take care.
Amanda Thorpe
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#5 KayTee

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Posted 18 January 2010 - 12:53 PM

That is almost exactly what happened to me with the local rheumatologist.
I'm definitely going to the experts now.
Kay Tee

#6 KayTee

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Posted 18 January 2010 - 12:55 PM

Thank you. I love the idea of making it a fun weekend instead of another doctor visit.
And thank you also for such a comprehensive site.
Kay Tee

#7 Amanda Thorpe

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Posted 18 January 2010 - 01:25 PM

Hello Kaytee

As you can see you have now graduated to the main forum...congratulations!

Remember to keep us posted!
Amanda Thorpe
ISN Sclero Forums Senior Support Specialist
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International Scleroderma Network (ISN)

#8 Snowbird

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Posted 18 January 2010 - 01:51 PM

Hello KayTee

Just wanted to welcome you too and suggest the experts are worth their weight in gold when you find a good one!! I'm sure it would be worth your trips, no matter how many you need to get sorted out. I want to wish you good luck and I am sorry to hear about your painful finger ulcers! Also, a big congratulations on being a cancer survivor :emoticons-yes:
Sending good wishes your way!