Recent Diagnosis and Multiple Specialists
Hello All. I am recently diagnosed with RA, Sjorgren Syndrome and possible SLE. All my symptoms indicate SLE, RA and Sjorgren but my Rheumatologist only diagnosed RA & Sjorgren Syndrome. I have concerning ECG's results, lesions on my spleen, "cysts" on my kidneys, a dry, croopy cough, avascular necrosis below both knees, nodules in my lungs, severe word recall, brain fog and using the wrong words in conversations, along with pitting edema on right side of my body, a high D-dimer test, and bleeding ulcers in my stomach etc. I'm seeing a cardiologist, pulmonologist, gastroenterologist, rheumatologist, family doctor and soon to see another neurologist...I feel, so does my primary family doctor, that each specialist blows me off to the other specialists and doesn't want to believe anything is concerning or if it is they all say, "We'll keep an eye on that". I push back and am treated like a hyperchondriac. I'm not even asking for meds, just answers to my pain and questions about things that the doctors said we're concerning on my CT Scans. However, when I try to address these issues they'll say, "well it's not that bad, but if "this" or "that" happens, come back in". Multiple times things that they said I should come back in for happen, I go back in to address and they blow me off or send me to another specialist. I'm frustrated with this, tired from all the appointments and have spent a lot of money on these doctors with no results or answers just a lot of anxiety and anger. I've had to take a medical leave of absence from my Master's Program and would love to get answers, start to properly manage the diseases and symptoms so I can go back to school in the Fall of 2023 to finish my Master's in just a year. Any tips, advice or encouragement through resources are appreciated. I'm a 45 year old woman who just needs answers and advice on how to handle the doctor situations, help with symptom management, and support because I feel all alone. Any suggestions on doctors in central North Carolina for specialists are welcome as well. Also, any good support groups in central North Carolina would be great. Thank you!
How terrible to be ignored in plain sight. After all that is what your doctor is doing to you even if they do not mean too.
The question is how to advocate effectively in the face of being ignored. I suggest think of yourself as less a patient and more of an advocate. There are some tools to help us be better advocates. One I often refer to comes from the world of disability awareness and advocacy.
This is a post about how to do it for the parents of a child with a disability.
https://nbacl.nb.ca/module-pages/tips-for-being-an-effective-advocate/
It is not exactly on point. But maybe you will get some ideas. Advocacy is like a muscle. It has to be used to get strong. One way you might start is by bring someone with you to appointments. The emotional and help and physical presence can shift the power the dynamic. It can mean a great deal to get your doctors to take you more seriously.
I wish you the absolute best. I know once you start on the path of advocacy noting cna stop you.thank you so much for your encouragement. I usually am well versed in the problems and medical know how but my brain is not working like it used to so I forget to mention or get distracted easily now. I LOVE that you suggested taking someone with me to help advocate when I can't. I never thought about before about off setting the power dynamic and making more equitable. Thank so much! Enjoy your day and stay safe out there.
oh the frustration you are going through, you are not alone. Many of us have had this issue and in time learned or are learning how to maneuver through the medical chaos our condition(s) can cause. Love the link that shared with you, it will be helpful I'm sure an some of the information and suggestions there are great! I personally am not in your area, but thought maybe this link to the Arthritis Foundation could help you, check the upper right corner, it ask for your location, hopefully there is something there you can find further help and such you are looking for. https://www.arthritis.org/
Then I seen that there is a facebook page for a group called ArthritisNorthCarolina someone there might be able to steer you in the direction of possible support groups or/and doctors in your area.
I wish you much luck, please know people here care.
Hi
. Thank you so much for the information and encouragement you offered . It is always great to see the way community members try to look out for each other. Best, Richard (RheumatoidArthritis.net Team)
My Mother had Alzheimer's, Scleroderma, Raynaud's, Sjogrens and Cancer. I remember reading where she needed a team of doctors working together to help her because without that every doctor would just treat her for one symptom and they all needed to be treated as a disease. The only way I think you can get that "team" of doctors would be in a large hospital that has each of those doctors located in the same area that can speak with each other to work together. My Mother passed away last September from her Alz's and I miss her so much but I know how much she suffered in silence with all of her issues. I now also have Raynaud's, Rheu Arthitis and Fibromyalgia along with other issues including chronic pain. I hope I can be half the woman my Mother was and be able to handle my issues. I pray that you find that "TEAM" of doctors who work together to make sure you get the correct treatment for you illness because those diseases are working together against you.
Best Wishes
BethDear Beth,
Thank you for sharing your story and encouraging me to continue to fight for my health and life like your mom did and like you do. I'm a very impatient person and I just feel so discouraged that I haven't even got close to managing the RA and the other illnesses. I found that the cardiologist is listening but I do not think all my specialists believe the RA is causing all my symptoms and problems. They are doing individual tests to rule out certain disease processes but do not acknowledge that any of my problems could be tied to the RA. I asked my RA Doctor if we could do the infusions to treat the RA aggressively and he just squeezed the joints in my hands and arms and said he thinks I'm doing good and that he could not recommend taking the infusions yet. I'm only in Plaquenil twice a day and Tylenol is all I'm allowed to take for pain because the Celebrex caused bleeding ulcers in my stomach. I ended up in the hospital this week and they gave me some Prednisone which has taken all my physical pain away but it wreaks havoc on my weight and mental/moods. Anyways, I so appreciate your suggestion of going to a big hospital where doctors can communicate easier and work together to address all my issues. I wish you the best on your journey to healing and managing your illnesses as well. -AngeliaHi
. On top of the excellent information provided by , I want to note that it can be useful to find a GP who can help serve as a health manager for coordinating care. My wife, Kelly Mack (a contributor here), has found it very useful to have a GP within the same health system (in her case a major university) who can see the various treatments and help monitor the complete health picture. Wishing you the best. Richard (RheumatoidArthritis.net Team)
