I AM SICK AND TIRED OF BEING TOLD TO GO FROM ONE DOCTOR TO ANOTHER DOCTOR TO ANOTHER DOCTOR!!!!!!!!!!!!
PAIN, ITCHING, SADNESS AND FRUSTRATION HAVE TAKEN OVER MY LIFE. I DON'T EVEN FEEL LIKE GOING TO MY APPOINTMENT NEXT TUESDAY. ALL THAT WILL HAPPEN IS NOTHING EXCEPT MORE TESTS...MAYBE AND DEFINITELY MORE MONEY GOING TO WEALTHY PHARMACEUTICAL COMPANIES AND MEDICAL ESTABLISHMENTS.I'M BEING PASSED AROUND LIKE TRASH!!!!!!!!!! I'M STARTING TO GET SO DEPRESSED. I'VE BEEN SUFFERING FOR YEARS. I DON'T KNOW HOW MUCH MORE OF HIS CRAP I CAN TAKE!!!
Join the club! Sorry most of us are in the same boat and no one cares that's why I keep trying to be contraversial and get fellow sufferers to stand up and make a fuss/complain to the politicians and charities and medics to take SS and AI seriously!!!!!!!!!!!!!!!!!!!!!
You have my heartfelt sympathy and empathy look at my profile and posts you'll see why.
ALL RHEUMATOLOGISTS AND MOST DOCTORS ARE MINDLESS TICK BOX JOBSWORTHS WHO HAVE THEIR BRAINS REMOVED AT MED SCHOOL _ AND I'VE BEEN TO ONE!
Good luck and cuddles but I can't offer anything more concrete - sorry.
I've spent $20000 on private medics and tests and been to 6 rheumatologists. neuros, orthos, cardios respiratory and urologists and NONE OF THEM KNOW DIDLY SQUAT ABOUT SS and ALL SAY YOU DON"T HAVE IT!
So you are not alone but I know that doesn' help :(
assybish, I'm not sure if you are familiar with the ALS ice bucket challenge that is sweeping facebook to raise awareness, but we should think of something for Sjogren's. They not only raised awareness but over $20k for research, and HOPEFULLY that is where the money will go!
Hi, I used health grades when choosing my docs and so far, it has helped…..good luck to you and hang in there. Whether I am at a good doc office or not, I hate just going and sitting in yet another room. It gets wearing.
SK…I had the same thought. One of my cousin's kids is a nurse and she posted that she thought the awareness was great but pointed out that only 20k in the US have ALS while millions have diseases like Alzheimer's, etc. She suggested if one is doing the challenge, they should pick what charity to donate to. I agree with you. Hoping Sjogren's Syndrome Foundation gets the idea too.
BTW, they can challenge me all they want, but icewater on an arthritic with Raynaud's is NOT happening!
Johns Hopkins has a center devoted to Sjogren’s. It is very difficult to get into.
Cleveland Clinic has several Rheumatologists who specialize in Sjogren’s. You can self refer to Cleveland Clinic. Ask to speak to the nurse on the hotline and she’ll pick out 3 or 4 doctors who specialize in Sjogren’s. I have been very impressed with Dr. Apostolos Kontzias there who answers your questions via e-mail almost immediately.
LOL SK, I have been completely ignoring it for the same reason. I have heaters running in my office because I can't take the air conditioning as it is. Not in a million years would I do that.
Thank you everyone. Today was just one of those days that were so frustrating. It makes no sense to me. I feel that if you are a Rheumy, you should at least know to help SS patients in a proper fashion. Why choose to be a Rheumy if you don't want to do your continual training? If not, than don't be a doctor. Sorry for the YELLING this morning.<3
DON"T APOLOGISE FOR YELLING that's what this disease does first their is the pain and loss of life, then the frustration of being treated like a retard by the medics then there is very clear evidence that SS directly alters the brain neurochemistry and cuase depression anxiety attacks and anger management issues. :)
One reason i don't post too often is I am angry so often and I know there is no positive medical intervention possible.
What is so crazy is that the same doctors tell you to try not to get stressed out or the SS will only get worse. Mean while, they're the ones that are stressing me out! LOL!!
I hope that the recommendations that have been offered here and on the discussion posted by dancermom for good Doctors will help point you in the right direction. I believe that there are good Doctors out there, and that there are meds that help. I do believe that is is always necessary to raise awareness and to continuously ask for better care, better meds, just realize that the Doctors can only offer the meds available to them.
Wishing you well,