Great advice! When I started getting leg and arm weakness during bad flares, I asked my rheumatologist if I was going to end up in a wheelchair. He said it’s not a certainty, but it is a possibility. I thought that was a pretty good answer because he was admitting he really didn’t know. No one really knows what the future holds, even doctors. Having said that, I do think that there’s a problem with long-term doctor/patient relationships. I believe that after a while, many if not most doctors start to put their patient in a “box.” The care isn’t at the same level it was in the beginning. We’ve been with them for so long that there’s nothing new under the sun, the doctor has seen it all before with us, and doesn’t think creatively. It sounds like that’s what happened with your first doctor.
It takes a truly confident doctor to say I don’t know. I totally agree with you, that is a respectable response. I do agree that some doctors like the new shiny freshly diagnosed patient as opposed to us veterans, I almost wonder if it’s because it’s fresh hope for remission when new patients walk in. That’s an interesting take on things. Thank you for helping me see things a little differently. Sending you extra spoons today on World Arthritis Day! Hugs my friend! ❤️
Dear Elaine.. I believe you may have saved lives with that vlog. I had been a bit longer than 30 years with the same rheumatologist..sent with positive Ana's , among other things plus a constant fever plus arthritis and migraines. He diagnosed me some osteoarthritis.Over the years add interstitial lung disease, an esophagus that is almost closed along with a hernia, I need a pacemaker as my heart is only beating about 30 beats a minute, several joints are huge and my muscles don't support me so I'm in a wheelchair. The upshot...2summers ago I broke out in a body wide rash. I took he handicapped bus to his office and he finally ordered the panel of labs I should have had years ago.He said he would call if anything came up..he never called.An entire year later I finally was able to get back in as he is very busy. I was ready for him this time as I had accessed my lab work on the quest lab patient portal...so scl-70 posiive..lupus anti coagulation posiive plus the Ra and Ana and cardiolipins etc. My hands were turning a deep purple and many other things. Incredibly this so called doctor comes in and tells me how great my lab work is. I Show him otherwise and he still won't admit he was wrong.There are no computers at all in his office and I come to find that patient records are stored on huge stacks on the floor of an empty room. I was not the only patient he did this to. There are very few rheumatologists in el paso texas but I'm finally where I need to be and just started cell cept as I had written in a comment to you when I found you a few days ago. This man did untoward damage o me but I'm moving on. The lesson here is to get actual copies of all reports and tests..look up what you don't understand and write down your questions so you can't be brushed off. With the help of God we determine our destiny and should never ever give up!Thank you for reaching out to many who need your encouragement and positivity! You are going a huge service to many.
Oh my, I am so so sorry to hear about your experience. Thank you for sharing with me. I hope you are in a more stable medical environment now. Thank you for your encouragement of my journey. It’s truly a blessing to me to have you all here. Sending you extra spoons! Hugs! ❤️
![LAVROV's interview with Tucker CARLSON 😁 [Parody]](/img/n.gif)
Great advice! When I started getting leg and arm weakness during bad flares, I asked my rheumatologist if I was going to end up in a wheelchair. He said it’s not a certainty, but it is a possibility. I thought that was a pretty good answer because he was admitting he really didn’t know. No one really knows what the future holds, even doctors. Having said that, I do think that there’s a problem with long-term doctor/patient relationships. I believe that after a while, many if not most doctors start to put their patient in a “box.” The care isn’t at the same level it was in the beginning. We’ve been with them for so long that there’s nothing new under the sun, the doctor has seen it all before with us, and doesn’t think creatively. It sounds like that’s what happened with your first doctor.
It takes a truly confident doctor to say I don’t know. I totally agree with you, that is a respectable response. I do agree that some doctors like the new shiny freshly diagnosed patient as opposed to us veterans, I almost wonder if it’s because it’s fresh hope for remission when new patients walk in. That’s an interesting take on things. Thank you for helping me see things a little differently. Sending you extra spoons today on World Arthritis Day! Hugs my friend! ❤️
Another great video keep fighting warriors 🎉never stop hoping and praying for a cure 👍🏼🥇🏆🎖️
Thank you! 🥰 Yes, hopefully a cure soon! 🙏🏼
Dear Elaine.. I believe you may have saved lives with that vlog. I had been a bit longer than 30 years with the same rheumatologist..sent with positive Ana's , among other things plus a constant fever plus arthritis and migraines. He diagnosed me some osteoarthritis.Over the years add interstitial lung disease, an esophagus that is almost closed along with a hernia, I need a pacemaker as my heart is only beating about 30 beats a minute, several joints are huge and my muscles don't support me so I'm in a wheelchair. The upshot...2summers ago I broke out in a body wide rash. I took he handicapped bus to his office and he finally ordered the panel of labs I should have had years ago.He said he would call if anything came up..he never called.An entire year later I finally was able to get back in as he is very busy. I was ready for him this time as I had accessed my lab work on the quest lab patient portal...so scl-70 posiive..lupus anti coagulation posiive plus the Ra and Ana and cardiolipins etc. My hands were turning a deep purple and many other things. Incredibly this so called doctor comes in and tells me how great my lab work is. I Show him otherwise and he still won't admit he was wrong.There are no computers at all in his office and I come to find that patient records are stored on huge stacks on the floor of an empty room. I was not the only patient he did this to. There are very few rheumatologists in el paso texas but I'm finally where I need to be and just started cell cept as I had written in a comment to you when I found you a few days ago. This man did untoward damage o me but I'm moving on. The lesson here is to get actual copies of all reports and tests..look up what you don't understand and write down your questions so you can't be brushed off. With the help of God we determine our destiny and should never ever give up!Thank you for reaching out to many who need your encouragement and positivity! You are going a huge service to many.
Oh my, I am so so sorry to hear about your experience. Thank you for sharing with me. I hope you are in a more stable medical environment now. Thank you for your encouragement of my journey. It’s truly a blessing to me to have you all here. Sending you extra spoons! Hugs! ❤️