Finally saw the new rheumatologist, and remembered why I dislike doctors and don't trust them. I have lupus, have had it for over 20 years, I went off all the meds a couple of years ago, I stopped seeing doctors then too. Well long story short, the new rheumy was annoyed that I wasn't being treated for my lupus and had waited so long to see a doctor, I'm too fat and that doesn't help with my copd/asthma or heart disease, I'm 4'9"and weigh 140 pounds, and to add insult to injury he will only treat the lupus, I will have to have several other work ups to deal with the other problems, I already knew that, I tried to explain I was hoping we could work at getting the lupus under control first and maybe some of the other problems would calm down, nope he's insistent, cardiology, dermatology, (who I had already seen, and he sent me to rheumy) pulmonology, neurology,nephrology, hematology, gastrology work ups before he will even treat the lupus, I had all these guys on board before, too many doctors, too many drugs, I will gladly go see the specialists once we get the LUPUS itself calmed down first!! What part of this am I not getting? I left there in tears and angry, I genuinely wanted help and relief from the lupus symptoms all I got was a long list of more doctors to see, and oh yeah he did order some blood work so he earned that $600 fee. It took me 2.5 hours to get there, he spent less than an hour going over the history and telling me what he wanted me to do before he could "effectively" treat my lupus, I'm thinking I'm actually better off leaving this alone, I'll take my chances living just as I've been without doctors to bankrupt me and medications that can kill me.. Since stopping everything it comes to mind I've not had to be hospitalized or go to an emergency room... Maybe I've just been lucky so far, while this might not be the best choice, its the least stressful and worrisome for all concerned. thanks for letting me vent!
I hear you!!!
The closest Rheum to me made a few serious mistakes and refused to keep seeing me. He was afraid i was going to sue him...which had not even occurred to me!!
I driven over 2 hours to try out next closest ones only to have them go against completely what i made clear before even making the appointment plus again when they had to change appointment dates or i had reminder calls.
All i want is to be treated as a partner. They give me my choices about what we can do to help the lupus symptoms and i choose which kind i like to try.
Like you, I want to be on least amount of drugs as possible. I found in the past that when Doctors do not talk and work together with my symptoms, i get on too many meds with many conflicting side effects. So only feel worse. In the past i have had doctors who insisted on working with all my other doctors and that the other doctors inform him/ her about their treatment plans with me...new symptoms, drugs etc. It was not hard since there is email!!
BUT like you...so far new doctors i have tried let their EGO get in the way what is best for the patient, ME!! I agree that you must see other specialists if you have problems outside of what Rheum deals with but they must work closely together. THe doctors i saw did not want to do this plus they wanted to insist what i do instead of treating me as intelligent person who is able to make intelligent choices for my body...especially if they are doing their job well by informing on any and all choices.
SO i do agree that you should work with other doctors for your heart etc problems BUT all your doctors need to be in contact with one another so you do not take over lapping drugs which can cause serious issues. Instead, try to find least amount of necessary drugs that might help both lupus and heart for example.
Like you...i am right now not on any meds and i can tell i really need to get in...but my experience with doctors has been so bad that i just delay it...which i know is not good for myself...or you. Guess we both need to bite the bullet.
I wish there was a place where you can find great doctors...i know about online rating sites but most people do not say what they specifically like about the doctor or there is no info for such. you think your health insurance might help.
IF anyone knows of places where one can go to find decent doctors who listen and work with their patients...try to do what is best for them, please tell me!! I am in northern calif and go to southern oregon as well, medford, ashland, klamath falls...as well as low as chico but that is even over 2 hours away so bit far.
I am so sorry like me you are having issues..one thing i have found that might help you is since you are seeing other doctors if there is one you really like, ask them for name of rheum they know is good. I ended up finding an excellent team of doctors by doing that way before. I hope that you like me can find a good doctor. i hear you loud and clear and agree it is very real problem.
Even with multiple medical problems if you have a good internist use of other specialists can be minimal but you certainly should be under medical care. There is a difference in minimizing your medications and flat out refusing treatment- a doctor cannot be expected to work with you when you refuse all rational treatment- much as he would like to help you he can't be responsible for your medical care if you won't also be responsible. It is distressing to have so many medical problems for sure but not doing anything at all is a very dangerous path to follow especially when you have multi-organ involvement. Hopefully you can come to some kind of compromise - where is your primary? Often physicians will restart your care even after a long absence without having to redo everything.
well this doctor sounds like a jerk!!!!!.....they should have least given you something to help with the lupus, and i can understand your frustration. i have had lupus since 1984 myself......i have not seen a rheumy in years, and i have an appt. now cause my gp doc does not feel comfortable giving me prednisone any more....i hope he is nice, cause i do not think i can stand someone PICKING ON ME.....man i am mad at that doctor you went to....but i will say one thing, since you stopped taking everything, and have not had to go to the er, maybe you are doing something right,,,,i too am overweight , i am 5"5 and weigh in at 205,,,and i do not want some jerk, telling me i am too fat,,,,,like i don't already know this, but with lupus and a bad back (i have to walk with a cane) i am not very physically active ,,,,,WOW GO FIGURE......whatever you decide to do , i am right there with you hopeful, you hang in there dear......and god bless you......purrs..catspaw1955
Wow I appreciate all the support, thanks.
I so relate to your post.. I have had a very similar experience as well. We only have one rheumy in our small area and he thinks he is GOD. Not joking. He has done some very reprehensible behaviors as far as how he handles his patients. I have been yelled at in front of other patients and reprimanded like I am a child. Completely inappropriate behavior and from others I have heard similiar horror stories about this same doctor.
I decided to drop him after a long history with him. I get this. Sometimes doctors DON'T know everything! Do what you need to make yourself feel better. I went thru the same with all the meds and different doctors didn't know what other doctors were doing. It was a total break down in communication and it almost killed me! You know your body best! I gave up on the whole doctor bullshit completely. I now just go to one doctor , a GP , and he deals with my symptoms as they come along. The rest of my care, I deal with on my own. You have to be your own advocate and when enough is enough, WE need to stand up for our rights as patients. We are paying them , not the other way around.
I hope you can find a doctor who will listen and try to work for you as best as he or she can . You deserve so much better than his jerk you went to. Keep searching and keep looking for the care you so deserve!
I am sorry to hear this but not surprised. I gave up on rheumatologists long ago. They treat symptoms and do not care about the person as a whole. (In general) I have a wonderful functional medicine doctor who works with me on all levels of health. I agree with lone wolf. Holistic care has offered hope and understanding for me. You can find functional medicine dr online here. https://www.functionalmedicine.org/practitioner_search.aspx?id=117
You should have people on your team that you trust. When it comes down to your ultimate care, you are your best doctor. All of these other people are just guides for us along the way. Take care.
I hate the system so bad. They put you through the paces just like people on a moving belt in a factory that go from one step to another. No concern for individuality or that you might not have the money for all of this, and they require blind faith. You dare not make any decisions on your own, or leave their care.It's like they think it is their religion and we are not worthy of their attention if we stopped any treatment. That's sacrilege! Most people don't even have the strength for the endless tests and appointments that they set up for us. They make illness a full time job. I have gone more and more toward natural remedies over the past few years, but I am blessed with a Dr. who lets me. Most will toss you out if you use anything natural, because they don't know anything about natural supplements etc. I'm allergic to so many chemicals and prescriptions that doctors can't help me much, because all they know how to do is pass out more pills. I even stopped a lot of their painful and invasive tests. I asked "What are you looking for, and if you find I have it, is there a treatment?" Usually the answer is no, so why put me through more trauma if there's no treatment? Just so they can officially write on a piece of paper that I had a test and I have a new condition. So sick of "the mill" they put us through. Seems like they keep us busy just to keep all those people employed. It's a frustrating life We need their help, but don't want to make their tests etc. our full time job.
Unfortunately, the rheumatologist can only help you with the Lupus part and the cardiologist is needed for the heart, etc. You ultimately should end up with a team of doctors that will keep each other apprised of what they’re doing in your treatment. Don’t wait, don’t quit taking meds. If I had done that I would have been dead 18 years ago. If you have insurance, please see the specialties your rheum is recommending.
Good luck. Prayers and hugs to you!
Omg so sorry. I’m sad that he can’t see that his approach could drive you to getting no treatment at all.
I agree with the person who suggested a functional medicine doctor- they try to get to the root of the problem rather than just managing symptoms.
I was diagnosed 21 years ago and have been through this run around several times because I have moved several times. And I’ve also gone at times with no doctor at all. So each time I had to start all over.
At this point the only thing I’m taking is 60 mg of Cymbalta which I am weaning off of now and 1 mg of Clonopin which I am also weaning off of. I recently got free of my chronic pain simply by going on a nutrition plan.
Why oh why didn’t I learn 21 years ago about this plan? 20 years of taking all kinds of painkillers and filling up my liver with toxins!
Still I’m grateful to be free finally from having to take pain killers in order to go to sleep.
I understand your wish to run far and fast from doctors after this, but as you know you do need to take care of yourself. Clearly this is not the guy you want overseeing your care. But I do think there is someone out there who can do a better job of helping you.