Posted 15 March 2007 - 04:43 AM
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!
Posted 15 March 2007 - 04:52 AM
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!
Posted 15 March 2007 - 05:37 AM
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!
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.
Posted 15 March 2007 - 05:49 AM
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!
Posted 15 March 2007 - 05:59 AM
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!
Posted 15 March 2007 - 01:45 PM
ISN Support Specialist
(Retired) ISN Chat Moderator
International Scleroderma Network (ISN)
Posted 15 March 2007 - 03:45 PM
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!
Diagnosed 2006 - Diffuse Scleroderma
Skin and lung involvement
Posted 16 March 2007 - 04:01 AM
Thanks everyone for the input. Guess I need to get to work!