Hi! I love your personable demeanor and delivery of information. Some docs deliver medical info so difficult to understand, you almost feel like you need to go to med school. I have been exhibiting symptoms of drug induced lupus. My ANA came back the last two times as 1.2. Would you consider doing a video on drug induced lupus? I hope so. Thank you for all that you do.
My main issues I keep coming up with is that the rheumatologists I've seen so far barely or don't do an exam and after 10 minutes tell me I have "just fibro". But the other doctors I've seen so far (physical therapy (6), primary doc, derm (3), and g.i.) all say I should see a rheum for my obvious autoimmune arthritis. I honestly feel like at the rheum....they just don't want to deal with me and my long crazy list of symptoms. After 20 years....I have a side list of things recently dx'd because of my research and fighting to get tested. So far everything I have tested positive for (that can reliably be tested for) are all things I felt I had for YEARS but was dismissed by doctor after doctor and often refused to referral for specialists. I don't bother letting the previous doctor know I am leaving. I ask for test results, etc. right away so I don't have to ask for my full file at once. I deal with bad doctors / offices as long as they are running tests or something that is progressive. Because a bad doctor agreeing to run tests is better than no doctor....or one who goes straight to fibro or ibs. I finally recently proved that my digestive and skin issues are not "just eczema and ibs". Next stop to neurologist and then spine doctor. It is insane the amount of leg work and research I have to do before I see these "specialists". I hate that everyone else believes I have something like PsA....but they won't dx me themselves.....it "has" to be a rheum to dx me with autoimmune? I'm mostly going to the neurologist so they can hopefully help me disprove the idea of fibro.
I have retro peritoneal fibrosis. 95% of doctors have never heard about it since so few no it exists. Only two cases in 2 million people in my Tri-County area. I have two aortic aneurysms. One ruptured previously, and I barely survived. One kidney left. Osteoporosis from prednisone I take. Teeth crumbling from the prednisone and all need to be pulled out. 10. Spinal compression fractures. My spine is shaped like a j now. Constant pain and I can’t take nicaids. I’m in New York and no one will prescribe opiates except for a couple a month. Been to numerous pain management clinics. Nephrologists, kidney doctors.. Spinal injections, facet nerves burn off my spine.. No place to turn anymore. I can barely walk because of the pain. What I need to find is a good undertaker at this point of time.
Great video and I'm exactly there on more than one front. I've been with my Primary Care Doc for over 25 years and that office has turned into a chaotic mess. I don't have another one lined up so I'll keep them until I survey the landscape and identify one. That said, I have LcSSc with Centromere B antibody. Over the past 16 years I've gone through at least 6 Rheumatologist. They don't see enough of it to spend much time and I end up feeling like I am better informed than the doctor. That said, I had an echo in February with elevated right side pressures even though all structures were reported as normal size on measure. LcSSc is high risk for PAH and rarely are patients referred to a PH Clinic for further evaluation if they are asymptomatic. My primary said cardiologists are the ones that refer. Neither would make the referral so I self referred to UT Southwestern PH Clinic. Neither one, the primary or the cardiologist know much of anything about Scleroderma and once you present in Category 3 or 4, there is virtually nothing that can be done. The term is screening not diagnosis. It makes me sick to my stomach that I could die because of a doctor's ignorance. Any orphan disease should be recognized as such and the patient should be referred to the proper clinic. Personally, I've given up and have also self referred to UT-Houston Rheumatology Scleroderma Clinic with Dr. Maureen Mays. You said a mouthful when you said an Academic Center. I should have gone to UT-Hou long ago. What is so sickening is I also asked my primary care to make that referral and was told it was beyond the scope of his clinic to make out of town referrals. It is so pathetic. Houston is only 4 hours away from me. In any event, I have UT Southwestern appointment on 5/29 and UT Houston on 5/30. I'm going to be seen by docs that understand CTD-PAH and LcSSc. Thanks so much for this video. I'm going to tell everyone on my Inspire Scleroderma support group to watch it. We've all been through the same stuff for years! God Bless!
The one rheum I saw declined me as a patient and told me I should have gone to an Internist, of which my husband is one. My family doc won't diagnose PMR.
I have tested highly positive for dsDNA four out of five times But my rheumatologist will only accept the one negative test that she ran. (Two other doctors ran the test and I ran one myself). I am ANA NEGATIVE wish throws a stick in the wheel. Also highly SSA positive.
No one is accepting medicare patients and if you can you can’t get an appointment. I have GCA AND 4 weeks of meds. I am sick of fighting. I will accept the fact that I will go blind.
Please don't go blind. I can't get a rheum either with Medicare and PMR.. Our wait is 8 months to a year if they will accept the referral. 3 so far refused me!
Hi! I love your personable demeanor and delivery of information. Some docs deliver medical info so difficult to understand, you almost feel like you need to go to med school. I have been exhibiting symptoms of drug induced lupus. My ANA came back the last two times as 1.2. Would you consider doing a video on drug induced lupus? I hope so. Thank you for all that you do.
My main issues I keep coming up with is that the rheumatologists I've seen so far barely or don't do an exam and after 10 minutes tell me I have "just fibro". But the other doctors I've seen so far (physical therapy (6), primary doc, derm (3), and g.i.) all say I should see a rheum for my obvious autoimmune arthritis. I honestly feel like at the rheum....they just don't want to deal with me and my long crazy list of symptoms. After 20 years....I have a side list of things recently dx'd because of my research and fighting to get tested. So far everything I have tested positive for (that can reliably be tested for) are all things I felt I had for YEARS but was dismissed by doctor after doctor and often refused to referral for specialists. I don't bother letting the previous doctor know I am leaving. I ask for test results, etc. right away so I don't have to ask for my full file at once. I deal with bad doctors / offices as long as they are running tests or something that is progressive. Because a bad doctor agreeing to run tests is better than no doctor....or one who goes straight to fibro or ibs. I finally recently proved that my digestive and skin issues are not "just eczema and ibs". Next stop to neurologist and then spine doctor. It is insane the amount of leg work and research I have to do before I see these "specialists". I hate that everyone else believes I have something like PsA....but they won't dx me themselves.....it "has" to be a rheum to dx me with autoimmune? I'm mostly going to the neurologist so they can hopefully help me disprove the idea of fibro.
I have retro peritoneal fibrosis. 95% of doctors have never heard about it since so few no it exists. Only two cases in 2 million people in my Tri-County area. I have two aortic aneurysms. One ruptured previously, and I barely survived. One kidney left. Osteoporosis from prednisone I take. Teeth crumbling from the prednisone and all need to be pulled out. 10. Spinal compression fractures. My spine is shaped like a j now. Constant pain and I can’t take nicaids. I’m in New York and no one will prescribe opiates except for a couple a month. Been to numerous pain management clinics. Nephrologists, kidney doctors.. Spinal injections, facet nerves burn off my spine.. No place to turn anymore. I can barely walk because of the pain. What I need to find is a good undertaker at this point of time.
Great video and I'm exactly there on more than one front. I've been with my Primary Care Doc for over 25 years and that office has turned into a chaotic mess. I don't have another one lined up so I'll keep them until I survey the landscape and identify one. That said, I have LcSSc with Centromere B antibody. Over the past 16 years I've gone through at least 6 Rheumatologist. They don't see enough of it to spend much time and I end up feeling like I am better informed than the doctor. That said, I had an echo in February with elevated right side pressures even though all structures were reported as normal size on measure. LcSSc is high risk for PAH and rarely are patients referred to a PH Clinic for further evaluation if they are asymptomatic. My primary said cardiologists are the ones that refer. Neither would make the referral so I self referred to UT Southwestern PH Clinic. Neither one, the primary or the cardiologist know much of anything about Scleroderma and once you present in Category 3 or 4, there is virtually nothing that can be done. The term is screening not diagnosis. It makes me sick to my stomach that I could die because of a doctor's ignorance. Any orphan disease should be recognized as such and the patient should be referred to the proper clinic. Personally, I've given up and have also self referred to UT-Houston Rheumatology Scleroderma Clinic with Dr. Maureen Mays. You said a mouthful when you said an Academic Center. I should have gone to UT-Hou long ago. What is so sickening is I also asked my primary care to make that referral and was told it was beyond the scope of his clinic to make out of town referrals. It is so pathetic. Houston is only 4 hours away from me. In any event, I have UT Southwestern appointment on 5/29 and UT Houston on 5/30. I'm going to be seen by docs that understand CTD-PAH and LcSSc. Thanks so much for this video. I'm going to tell everyone on my Inspire Scleroderma support group to watch it. We've all been through the same stuff for years! God Bless!
Good luck to you for your upcoming appointments! I pray you get things sorted out! 😊❤
@@HopefulEmpath Thanks for the well wishes. Yep, it's all happening next week!
The one rheum I saw declined me as a patient and told me I should have gone to an Internist, of which my husband is one. My family doc won't diagnose PMR.
Thank you so much for your videos. Do you have any advice on general diets for rheumatoid arthritis or any good channels that would assist.
Can you do a video about crohns extra intestinal manifestations from a rheumatologist point of view.
I have tested highly positive for dsDNA four out of five times But my rheumatologist will only accept the one negative test that she ran. (Two other doctors ran the test and I ran one myself). I am ANA NEGATIVE wish throws a stick in the wheel. Also highly SSA positive.
No one is accepting medicare patients and if you can you can’t get an appointment. I have GCA AND 4 weeks of meds. I am sick of fighting. I will accept the fact that I will go blind.
Please don't go blind. I can't get a rheum either with Medicare and PMR.. Our wait is 8 months to a year if they will accept the referral. 3 so far refused me!
@@zootybeano I am in Florida what state are you in.
I know how you feel about the undertaker😢
A palliative care doc could prescribe an opiate patch. Best wishes to you.