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...
Tomorrow is the first time my teacher disability comes before the medical review committee of my teacher retirement board. Historically disability goes through if your personal physician submits his records and fills out the application with a clear statement of disability as to why a person can no longer teach. My rheumy was awesome. We did the application together and he hammered at the fact that my RA is severe, very symptomatic, rapidly progressive, etc..... We also listed that I was disabled due to osteoarthritis of feet and spine with lack of mobility and lack of ability to stand up and teach. The fact that I can't work more than a day or two a week was reiterated several times, that I needed to rest my inflamed joints frequently was mentioned as well. We not only listed RA and OA as diagnoses but also fatigue, depression, chronic bilateral plantar fasciitis, Lumbar Back Disorder and Pain, hypertension, and possibly a decrease in cognitive functioning. Doc said I had no functional ability to remain a teacher. He even mentioned I have muscle loss and myositits.
I am RA seropositive but never scored high on ESR or C Reactive Protein. But you can see the swelling in my knees from 10 feet away though my pants yet these blood markers are normal. I did have a very high Vectra DA (a test for disease activity using many blood markers) last Winter before starting DMARDS. My rheumy is fully aware that less than 50% of RA patients score postivie on these bio markers, that meds can throw them off and that the only way to see inflammation in the joint would be to put microchips in each joint. He said he treats the joint not the blood and I respect him for his forward thinking. What concerns me is that the medical review committee are older semi-retired doctors who may buy into this stuff. On the other hand I have studied the minutes of their meetings and while they've had to ask for complete records I never saw them ask for a newer lab result, just sets of missing records. My new rheumy and my old one) have my joints pretty much all listed as tender, swollen, and with limited range of motion. Considering ESR and C Reactive Protein has false negatives I would hope they go with all the physical examinations over a non-specific blood test, or put another way the words of my doctor over their pre-conceived notions seeing no one on the panel is a rheumatologist.
As always I am worried and I probably have a much more legitimate claim than 80% of the applications. I really can no longer funtion(:
Considering the above and the fact that RA has yet to be denied my retirement board should I be worried?
I am RA seropositive but never scored high on ESR or C Reactive Protein. But you can see the swelling in my knees from 10 feet away though my pants yet these blood markers are normal. I did have a very high Vectra DA (a test for disease activity using many blood markers) last Winter before starting DMARDS. My rheumy is fully aware that less than 50% of RA patients score postivie on these bio markers, that meds can throw them off and that the only way to see inflammation in the joint would be to put microchips in each joint. He said he treats the joint not the blood and I respect him for his forward thinking. What concerns me is that the medical review committee are older semi-retired doctors who may buy into this stuff. On the other hand I have studied the minutes of their meetings and while they've had to ask for complete records I never saw them ask for a newer lab result, just sets of missing records. My new rheumy and my old one) have my joints pretty much all listed as tender, swollen, and with limited range of motion. Considering ESR and C Reactive Protein has false negatives I would hope they go with all the physical examinations over a non-specific blood test, or put another way the words of my doctor over their pre-conceived notions seeing no one on the panel is a rheumatologist.
As always I am worried and I probably have a much more legitimate claim than 80% of the applications. I really can no longer funtion(:
Considering the above and the fact that RA has yet to be denied my retirement board should I be worried?
Greg
Being the worrier that I am. I'm anxious that my inflammatory markers are normal and have been normal since day one except on the 900 dollar Vectra test. This board of elderly doctors should be trusting several doctors who have seen and felt the swelling and know that RA assessment is based on more than blood work. My Clinical Disease Activity Index is high and DAS 28 is high and CRP is even being removed from these tests in many cases because of their inconsistency and the fact that they only comprise 20% of the disease measurement. If these disability doctors go with the other more reliable measures of disease activity such as swollen joint count, tender joint count, range of motion, etc.... then it shouldn't be an issue as all 3 rheumys I have seen say I have high ongoing disease activity and my current rheumy claims every joint I have is swollen. tender and lacks motion.
HEARING AT NOON TODAY! PLEASE SAY A PRAYER FOR ME!
Greg
As for CRP or SED rate my rheumy said that he treats the patient and the joint, not the blood and told me to stop worrying and that 80% of inflammation and disease activity is determined by physical exam and that these tests are very inaccurate but will be used until a mathematical formula is discovered.
He also saw how badly my knees were swollen and the water that was there so he drained them and shot them with cortisone. He is sending a sample of the fluid to a lab and then he had me go to another lab for a bunch of blood tests, one being Lyme disease. Now, he knows Ive tested negative for that before but what if I was to get Lyme (again) and not see the bulls eye? I would never notice the joint pain and attribute it to RA or OA. Driving home I realized what an intelligent move it was to include that in my blood work along with liver and the rest of the important tests.
I went through 2 other rheumys to find this guy. One I spent a long time with and she doesnt hold a candle to him. The other I only saw once and he claimed to put the vast majority of his patients in remission. He had no bed side manner and I dont like arrogance. So now I drive about 20 minutes instead of 5. So what? I found a doctor who treats me holistically, cares enough to work on getting me a modified schedule (disability) and seems to genuinely care. Plus blood tests dont dictate every move he makes. On my second visit he thought I was sero negative (he forgot about my RF Factor) and he had no intention of treating me any different. He seems to be what many of us are looking for. This guy is incredibly nice as well. Real nice! I think I hit a home run by waiting it out.
My point is that if you are not happy with your rheumy at the moment, or they wont help you with disability or if they spend the entire visit looking at your lab work on the computer screen then maybe you should start looking for a replacement! There are some very good doctors out there !!!
Christine, did you say you wren't happy with your rheumy or that he wasn't going to help you with something as important s disability? Does he not believe you need it or is he not interested in getting involved in paper work? Maybe you need to keep looking as well. Pardon my French but Frick these doctors who went into medicine for their own financial gain or status in the community. We deserve better!
Greg
Sounds like your one of the lucky ones to have a doctor who thinks outside that outdated text book. I'm glad.
Kudos for standing your ground with your PCP. This kind of thing needs to happen. Who knows you may help the next patient with this PCP with RA. It blows my mind that any doctor would believe that's all RA is about. Then again there are Rheumys that under estimate the havoc this disease causes.
I'll never understand this. They see patient after patient & we know they must see & hear just how much damage it can do. How can a specialist remain in such denial when they see the true impact this leaves on their patients life?
Often wonder how some doctors can sleep at night .
Perhaps this is one reason depression exists amongst patients.
Lord knows it's enough to deal with add the very people you depend on to use their expertise only to be left with no answers. Or worse yet the patient gets the blame, whether it's diet, life style or worse it's in our heads.
Speaking up & advocacy is our only hope for now of bringing attention to the seriousness of this disease.
Sending positive thoughts
Sammy
Sammy, "Outdated textbook" is a good word for it. Maybe these doctors don't have time to keep up with current studies but if they aren't finding time for that then they aren't doing their jobs! As a teacher I've had to keep up with trends in education my whole life whether I liked it or not. I have decided that when I do need a new doctor for any reason that if they aren't advocating for me and showing genuine concern then I'm outta there! There are plenty of articles out there that discuss the impact kindness and compassion have on pain and healing. A physician should desire to be a healer first! In fact "healer" and "physician" are synonyms or at least they should be. That's what I'll be looking for in the future.
Thank you for all your support. I'm still having anxiety over not passing. Maybe I wrote so darn much on my portion of the application that they'll see me as being desperate. All these thoughts go through my head nightly and I'm losing sleep! Hopefully it will be over soon!
Greg
Looks like your Rheumy has done an exceptional job for you. All will be well - prayers going up for you from my corner of the world!
All your ducks are in a row.
Linda
i want you to ruminate on something congratulatory that you are going to do for yourself now.
hugs
depot
Truly great news to hear so so happy for you, again congratulations!!
Debora