Hi All
Is there any online information that gives the names of Primary Care Doctors who are familiar with treating sjogrens?
I live in CT and although I love my GP, Im not sure how familiar she is with sjogrens. When i go to the doctor with "assorted complaints" I want to know if it is related to the sjs..or should I be going to my rheumy for these things..sorry I'm confused! :-\
I really doubt that there is anything like this, angels04.
I mean even most rheumies don't 'get' Sjogren's.
Good luck.
Keep us posted.
Hugs
Elaine
Hi, I was wondering the same thing. My idea was to call my rheumy and ask if he knew of any primaries in town who were a little more educated on autoimmune conditions. If that didn't pan out, I thought I'd start calling some different offices and asking about the doctor's specialties. Another avenue might be to see if there are any support groups in your area and talk to them. Even a doctor who treats patients with lupus or RA, and is well liked, might be a good option, since they are a little easier to find.
Anyway, those are my ideas, hope they help a little!
Ask them if they have sjogren's?
Quote from: Joe S. on January 02, 2012, 06:33:28 PM
Ask them if they have sjogren's?
I'd never want my Dr. to have Sjogren's!!! Shesh if they would be as reliable as I am from day to day we'd both be in a world of trouble ;D
My female rheumy has Sjogrens and is a little spitfire of about 70 who looks and acts 55. She is compassionate and very, very smart. I get "choked up" when I think she might retire. I have to travel an hour and half one way, but I'll never be able to replace her. Lucy
I don't think I've met a GP yet who understands SJS. I think my dentists understands it better than Most GPs do. If I am experience anything that might be SJS related I would get an appointment with my Rheumy way before calling my GP.
I just change to a GP who, though he doesn't currently know much about Sjogrens, is starting to learn. The way that I came to him was interesting - my significant other got assigned to him when we moved to a new area, and in every interaction this doctor was filled with details, very evidence based, and had a good sense of humor, or even whimsy. My SO really liked him.
I had a different GP, who was just fine, but not really interested in the Sjogren's bit - if it was Sjogren's related, go see the rheumy. Of course, I've got lots of problems that are Sjogren's related but not necessarily for the rheumy (like chronic diarrhea) , and I just didn't feel like my GP was helping me figure things out.
So I scheduled an appt. with my SO's GP, and explained the overview of Sjogren's and how what I was looking for was someone to help me sort out which paths to go down, as well as to be there as a backup if I have an immediate problem and can't get into a specialist. And then said - if this seems like something that is different from how you'd like to do things, just say so - I understand I'm asking for a lot.
Well, I was lucky - he was very excited by it. So he's doing reading, and he's given me some reading to do on chronic pain management, and so far he's been great.
The short version is - If you know some that has a good GP, see if you can turn him or her into someone interested in Sjogren's, even if they don't know much about it now. It's really about attitude - are they willing to deal with complexities and are flexible enough to suggest various options for you.
My GP's PA is learning about SJS from me and maybe others by now. The oher day, I mailed a Sjogrens article in with their Christmas card. Maybe they didn't appreciate it. I thought I'd bring it to their attention though. Can't hurt. Lucy
Lucy, I hear you about Dr. B....not sure what I will do when she retires. She brought in a new doc from U of M that specializes in Lupus, so Im anxious to meet her on my next visit.
I use my rheumy as my primary care doc. She is pretty much the only person I need to go to. She runs tons of labs and seems to keep on eye on everything, and I always make sure things get tested as well.
Gursie
I have a GP who thinks people can find out more about their diseases than he knows because of the internet. If I ever decide I want to try a new medicine, I will print out information and take it in with me. I am sure he will be willing to help. The only thinh they give me for pain these days is tramadol or hydrocondone. I have tried Lyrica, Neuroton, etc. They make me feel drugged and I can't function. :(
Angels04,
Where in CT are you? If you are in New Haven or Fairfield County, I will private message my GP's contact info to you. He's in Shelton, and he's absolutely fantastic.
I've been lucky to find doctors who, like Reanne's, listen to what I have to contribute, but are educated and insightful enough that I don't really need to do my own research. I do anyway because I like to know the ins-and-outs of everything, but when I really don't feel well I just leave things in their very capable hands.
--C.
My GP and my Rheumy are in the same "practice" so even though my GP doesn't understand it, my excellent Rheumy does and they enter all the information into one system. So if I see my GP for something, he can note it and I can always shoot a message to my Rheumy to see if there is a sjogren's connection.
dragonfly. I am in New Haven county...
My GP didn't know anything about Sjogrens. BUT when my blood numbers kept climbing he was smart enough (and humble enough) to send me to a specialist to figure out why. Wasn't his fault I had to go thru 6 yrs of them before I found one who gave me a diagnosis of Sjogrens.
My GP has read up a bit on it and is more familiar with autoimmune disease. I think I was his first with Sjogrens and I think his only patient w/it too. I am very happy with him and he thinks my workplace sick policies are asinine. He strongly suggested and instigate the FMLA for me and was happy to do it. (H1N1 then, 105 temp, etc etc & work was going to reprimand me if I didn't come in then. >:( ::) ) I honestly feel he is On My Side.
I will take a trainable/learnable dr over a "know it all but doesn't" anyday.
Generally if you want to be specific w/a dr - just ask about one that has lots of experience with autoimmune diseases. You can't expect a GP to be a specific specialist.
This is wonderful to have support and share Doctors! So wonderful :) happy tears!
I also believe we can call The USA Sjogren's Foundation as they keep lists of Doctor I think and I know they keep Support Group lists!
For me I ended up at a University first and they just kept giving me meds. I remember the pain wasn't even helped by mobic. I was suffering so much... GERD, headaches the works!!!!! Then I finally paid for a private doctor (we can get this reimbursed sometimes) and they helped me get off the excess meds because often the conflicting side effects of multiple meds can make one feel worse. Not all Doctors are the same - we are hiring them as detectives - if they don't help or don't respect us we have to get to a place to move along to someone better!
Best of luck!!!