I have my second appt with my rheumatologist tomorrow since being diagnosed...

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  • I go through the same exact thing. It's crazy making when my Rheumatologist responds to all my notes with "but your lab work is perfect"....Grrrrrr....ugh...

  • Yes I hate how they go off of numbers but not how we truely feel...

  • i definetly can relate to this!

  • I know! Despite all the evidence to the contrary, Rheumatologists still go by the numbers. Ugh!

  • Hmm still learning the 15 minutes you receive talking to rhuemy is short ,pay attention to your bodies and do as little as you cAn or as much as you can x

  • Thank you, I'm going to go in there and list off all my symptoms and go from there, hopefully she will listen and help :)

  • Xxxxxxx Yzzzzzz have faith and prayerfully she will the saddest part of our life is it's still a huge mystery even to drs ... anyone in family have it,I've never ever gotten butterfly

  • thank you. No one in my family has any of my issues and all the doctors say I'm "unique" ...I guess that's one way to put it lol kidney diseases lupus and obgyn issues...joy

  • Xxxxxxx Yzzzzzz I'm convinced mine is from mesh hysterectomy 2004 ,lupus 2006 joints lungs heart ❤️.. now aquired hemophilia factor vlll from medical mesh ..

  • oh my :( I go in next month to have an edermal ablation and my tubes tied, they said I wasn't healthy enough for babies due to endodemetriosis and all my other health problems. I only have one son :(

  • Praying

  • thank you xxx

  • You need to, it's a checklist for them ~ helps them determine how Lupus is affecting you personally. There are tools at the Us in Lupus website to help you ~ checklists to print out, instructions on how to communicate with your doctors (because time is always limited). I'm in my first flare in 9 years and had to learn all over again how to communicate ~ they even have a Lupus Dictionary so you can use the words your doctor will understand better, and for you to understand what S/he is saying. I take all of those papers with me (give them the checklists when you get there to put in your chart before the doctor sees you) and it has helped immensely!!

  • Www.usinlupus.com

  • thank you for the advice

  • Xxxxxxx Yzzzzzz I have found I get better treatment and quicker results from my doctor now using the checklists

  • im glad it's helped you I hope it does the same for me too ❤

  • Yeah lists have never workd for me, i finally made serious headway with my rheumy when i reasearched lupus on Mayo Clinic and Cleveland Clinic,, showed the results to him and he could not argue because thats straight from the American Board of Rheumatology, which ALL rheumys have to follow.

  • Prayers

  • I go in with my list of symptoms, the regularity, my level of concern/annoyance and which of my medications seems to help that particular symptom. I let them know what over the counter medications I have tried and how effective they were as well. I feel that they understand that I am always looking for a solution. I try to be my own advocate and my own first line of defense. When I can't find a solution, I consult my Doctor partner. I've never been treated any thing but respectfully by all of my doctors.

  • Sounds like you have a good system :) I will have to try that. I'm glad you have great doctors too that's such a relief ❤

  • It is. I've changed doctor's as I've moved coast to coast and have always had a supportive team. I hope you it all works out for you.

  • This is your health, what she thinks of you is not your business. If she does not do what she needs to for you, nicely remind her what her job is. We need to advocate for ourselves, this isn't a cold or the flu, it will not be gone next week. She will need to be Team Danielle or you need to keep hunting for a new Rheumy. I have often said finding a good doctor is like dating, you must kiss a few frogs before you find the prince. Just because she holds that degree does mean she's right for you. Tell her all that is going on so she can make an informed decision on what your treatment needs to be. Lupus has some symptoms that are "checklist" types and that is why so many sites that talk about it have them listed. If your symptoms are text book so to speak that should help her. I started this journey being nice and letting these doctors make me feel like I was a little off but I learned quickly, they have 12 years of book training, I have 47 years of experience in this body and you're going to listen to me or get the hell out of my way so I can find someone who will, we are literally fighting for our lives and if they can't be on my team then trade them.

  • You go Kellie girl!!

  • You know its true Gail, some of these people go to medical school because they thought they would make a lot of money, they don't care about the patients but there are some good doctors out there, we just have to hunt for them. Sometimes the "bad" doctor can become the good doctor if you stand your ground and let them know that you pay their salaries and help with those Benz payments. You can do this nicely, YOU are in control and once I realized this, I was dangerous lol I shocked a few of them because I am always smiling and joking and then all of a sudden somebody got snapped off on.

  • I feel the same way. I was getting ready for my Uncle's funeral one day, my ear started ringing really loud, i felt i had to call someone and let them know, ( but Drs, and family always make me feel like nothing is real. But i called my Rheumy and told them my ear was ringing really loud. Got in my car and headed to the funeral, got there and i felt drunk. Called the Dr. again, he said i'm not treating you for that so contact your family Dr. So my daughter thought i better go to the E.R. they thought i'd had a mild stroke. Well 4 days later, never seeing an ear specialist, and i get home and my Rheumy had left a message on my phone, if you can't find a ENT, please call the office. By the time i got to see an ear Dr. it was to late. He told me when you lose your hearing like that, you only have 24 hours to save it. I've lost my hearing in my left ear. And its a part of Lupus. Rant over. Thanks for listening.

  • It's like that for us. There are so many different symptoms, that you wouldn't think have anything to do with the other until you hear someone else having the same many issues. So, you're doing the right thing, write them down and inform your doctor of all of them.