Rheumatoid Arthritis Support Group
Rheumatoid arthritis is a chronic, inflammatory, multisystem, autoimmune disorder. It is a disabling and painful condition which can lead to substantial loss of mobility due to pain and joint destruction. The disease is also systemic in that it often also affects many extra-articular tissues throughout the body including the skin, blood vessels, heart, lungs, and...
Does anyone else feel if they don't go in to their doctor's office demanding something, they will write you off and give you a generic answer that solves nothing?
At 25, I have been told I have mumps, chronic fatigue, anxiety, iron deficiency etc etc.... because my PCP could not figure me out. It wasn't until I went to a rheumatologist and had seropositive Sjogren's that things started making sense. Even then he told me "Well, we know you have Sjogren's, but you also MIGHT have RA or lupus."
Now I see a new rheumatologist in Boston who has 50+ years of experience, and since by CrP and anti-CCP are normal (but my ESR, RF, and ANA are all high) - he told me to add tylenol to meloxicam and plaquenil... and that should work.
Wrong. And my rheumatologist does not feel comfortable starting stronger meds because of my labs. Soooo I took it upon myself to see an allergist as a last ditch effort -- for gluten + RA association. And what does this doctor tell me? -- "You are wasting your time, I can't help you."
I am desperate here. I don't want to knock down my rheumatologist's door and demand something like MTX .. but c'mon... I can't even tolerate a hand shake.
Any words of wisdom?
At 25, I have been told I have mumps, chronic fatigue, anxiety, iron deficiency etc etc.... because my PCP could not figure me out. It wasn't until I went to a rheumatologist and had seropositive Sjogren's that things started making sense. Even then he told me "Well, we know you have Sjogren's, but you also MIGHT have RA or lupus."
Now I see a new rheumatologist in Boston who has 50+ years of experience, and since by CrP and anti-CCP are normal (but my ESR, RF, and ANA are all high) - he told me to add tylenol to meloxicam and plaquenil... and that should work.
Wrong. And my rheumatologist does not feel comfortable starting stronger meds because of my labs. Soooo I took it upon myself to see an allergist as a last ditch effort -- for gluten + RA association. And what does this doctor tell me? -- "You are wasting your time, I can't help you."
I am desperate here. I don't want to knock down my rheumatologist's door and demand something like MTX .. but c'mon... I can't even tolerate a hand shake.
Any words of wisdom?
And 'dumb things doctors say' = brilliant.
The first rheumy I saw was young...maybe in practice for 8 years. He strictly went by lab work....but only if ALL markers were off/positive. I had a few off and a pathology report stating "consistent with rheumatoid arthritis" for a nodule that was remove...yet he refused to dx and/or treat it.
My current rheumy is in his late 50's. He's amazing. Dx'd me as soon as he saw me and my lab work. The x-rays were just a bonus to him.
I guess there's good and bad at all levels.
We tend to forget we are doing the hiring here. I hate to say this but many, me included will put more time into interviewing a contractor or mechanic over questioning a doctor.
I do believe for many of us our parents were of the generation they just listened & took what their doctor said as gospel.
I'm happy to see things changing there. I do believe some doctors develop "superior complex" syndrome.
My girls pediatrician was older, much older, yet one of the best doctors I've ever seen. He would not take chances with his patients & listened to not only the parents but the children.
I've had a couple great doctors, different ages.
One OB/GYN actually apologized after I was treated poorly in his office, young & modern. He said it was becoming hard to compete with female OB/GYNs & he did not want a bad name.
First time any doctor apologized. My mouth was hanging open I swear.
We as patients have to remember we are " hiring" these doctors.
As Bluedog has pointed out they can be fired, we just don't think of it like that.
My 19 yr old was fed up with her doctor not listening. Went on line did her research & found a doctor that patients recommended. She's happy with this doctor 11/2 yrs later.
I think we will see changes in the future, with tools available more people are investigating before choosing.
I'd like to see more sites that patients can go on to get others patients opinions & ck out their credentials. I've heard horror stories over the years about doctors. I swear enough to sit there shaking my head.
Charts follow us also we do need to be more wise in choosing.
Doctors opinions & comments are not always professional or nice.
Yet it's documented & the patient is none the wiser.
I've taken pictures of my hands & feet on bad days, as my RA relies to much on labs
I hope you find a doctor who does the job they are suppose to do.
Ears & eyes open & mouth shut long enough to listen to you.
Won't hurt to take a list of questions, concerns & any & all test results.
God bless, Sammy