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Biomarker for Diffuse Scleroderma skin has been discovered!


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#1 Nancy K

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Posted 15 March 2007 - 04:43 AM

Hi all! Hadn't been on in awhile cause I've had a fever for a few weeks that's been getting me down! I wanted to thank you all again for the encouragement you gave me before my GI visit last week. Unfortunately, this doctor, like all the others I've seen in Florida, is unwilling to listen to his patient. I told him of the fever and constipation for 7 days, and he prescribed erythromycin to help with moving food along, which he's tried before, and he poo-pooed the fever. He also tested for Celiac Disease, which he'd already done last July, and it was negative. But, he said I was mistaken. I have the records, so I checked them when I got home, to make sure I hadn't lost my mind, and sure enough, he'd already done the test and it was negative, and he'd already tried me on the erythomycin, and it hadn't helped.

So, it becomes increasingly clear that I need to find different doctors all around! Is there anyone in Central Florida who has a rheumatologist, GI, Hemotologist combination that actually work together, get to the cause of a medical problem and give you a diagnosis, and listen to you when you present a new or existing problem? Cause I'm beginning to think that all doctors are bad, and I know that's not true. But C'mon already! Do I need to move to get treated seriously?

Thanks again for letting me vent!
Nancy K :rolleyes:

#2 Sweet

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Posted 15 March 2007 - 04:52 AM

Hi Nancy,

Oh how frustrating! In this day and age its very sad to me that doctors don't 'listen' to their patients better! I'm really sorry, you must be so discouraged. Ask around to people you know, get the phone book out and search, there has to be someone there that is decent and can help you!

Hopefully someone else will post to this and give you the name of a great doctor in your area!
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#3 Shelley Ensz

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Posted 15 March 2007 - 05:37 AM

Hi Nancy,

I'm sorry you are having a frustrating experience with doctors. I may be wrong (I often am!) but I think one way out of it would be to forget the idea of a rheumatologist, GI and hematologist combination working together to find the answers. Unless you are in a very large and very well-coordinated clinic that is devoted to teamwork, that is not very likely to occur.

So instead, I'd like to suggest the idea of looking for a great internist (internal medicine doctor). To do that, first select the best hospital in your area that you'd prefer to go to in the unfortunate event you'd ever be hospitalized.

Contact that hospital and ask them what internal medicine clinics or doctors have admitting privileges there. Call those clinics (perhaps the ones nearest to you) and see if any of their doctors are still accepting new patients. Then inquire about the background, training and interests of each of those doctors.

Tell the receptionist or nurse your situation (very briefly!), and ask which doctor they'd pick if they were in your shoes.

Once you have 3 top picks from 3 different clinics, set 10-minute get-acquainted meetings letting them know that you are interviewing the doctor to see whether or not this would be a good fit. (There is often no charge for that type of appointment, but make sure of that, of course.)

Having a selection of 3 doctors will change your perspective, and give you the time to ask questions to see whether this is the right doctor for you. I've found that my gut usually delivers an instant "Yes!" or "No Way!" but I still take the time to go through all my questions, in case Dr. Yes turns out to be all charm but no substance.

Make it clear to your new internist that you would expect them to be the point person for all of your medical care, coordinating things between all the specialists.

If you have a great internist, odds are fairly good that they will work hard to refer you to equally great specialists. And while waiting on a diagnosis from specialists, you can still get your symptoms taken seriously and treated properly.

It's certainly a lot of work. But you wouldn't believe the huge difference it can make in arranging for a proper medical team!
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.

#4 Nancy K

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Posted 15 March 2007 - 05:49 AM

Thanks Pam & Shelley! Actually, Shelley, that is the route I plan to take, but I've already tried out the internists that are within driving distance for me, which means a 2 to 4 hour drive. I live in central, very rural Florida. I think I am going to check out the clinic in Grand Rapids, MI, as my family has a home in nearby Ludington.

I've exhausted the Florida doctors. The internists I've seen here are quick to tell me up front that they aren't familiar with Scleroderma & my multiple autoimmune disorders, and that they won't treat the overall condition. So, I need to find someone that is. I just don't think it's possible here, and frankly, the idea of going doctor shopping gives me a headache! But, I know that's my only option. So again, unless someone has an understanding doctor here in Cenral Florida that they can guide me to, I think I'm looking at a major move back up north!

Thanks again for the support and the great ideas! Keep em coming!

Nancy

#5 ErinF

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Posted 15 March 2007 - 05:59 AM

I'm so sorry to hear about your bad experience! I have to admit after reading so many posts it seems like the one thing 99% of scleroderma patients have in common is really bad experiences with doctors. I feel really fortunate in that I found, fairly quickly, a primary care physician who took one look at me, read my past records, and said "You're not crazy. You're sick, and we're going to find it and do our best to make you well."

I think talking to others, especially other sclero sufferers in your area (maybe a support group within a few hours drive?), could help you find doctors who treat you with the respect and dignity you deserve!

Good luck and hugs!

Erin

#6 Sheryl

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Posted 15 March 2007 - 01:45 PM

Michael, do you have good Sclero doctors or internal medicine doctors in the area of Florida that you live? Maybe you could steer Nancy in the right direction. Any other Floridians? If you decide to go to Michigan Nancy. Pick U of M Hospital. They have a slew of doctors that work together as a team. Dr. Elena Schiopu is my rheumatologist/sclero expert. She works with a doctor who is renowned in his field. I have an excellent internal medicine and gastroenterologist where I used to live in the Downriver area. I was planning to switch all my doctors to U of M. But, when you have excellent doctors you just don't want to change to save an hour in distance. Good Luck Nancy. I think Florida has a better climate than Michigan. I do quite well here. When I go home in two weeks. I will be cold all the time. Getting Raynaud's attacks and feeling aches and pains I don't feel when I can be outside here. Something to ponder.

Sheryl
Strength and Warmth,
Sheryl

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#7 Kiwi

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Posted 15 March 2007 - 03:45 PM

A little comment for the constipation!
A specific herbal tea at night , lots of water during the day, excersise and plenty of vegies and fruit (particularly pears).
Good luck and I think we can all agree that you really have to fight for your corner!
Kiwi

Diagnosed 2006 - Diffuse Scleroderma
Skin and lung involvement

#8 Nancy K

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Posted 16 March 2007 - 04:01 AM

Thanks Sheryl! I will keep that in mind. As far as Florida's climate, the warm is great now, but in two months, we'll be begging to go to Michigan!

Thanks everyone for the input. Guess I need to get to work!

Hugs,
Nancy K