Another frustrating appointment

@joannemm30809, @krisjb1 ,
I feel the pain from both of you. Been through the same scenario for the last 5 years and still no clear answers. Self-care is primarily the reason I’m still here! So damn frustrating!,

Keep up the good work. You are probably doing a better job than an MD could do. You care about you and he or she does not. I frequently order my own tests from Life Extension. They have quite a few and their prices are good too. Results are usually very quick. As a bonus, there are people on staff who can help with interpretation. As far as prescriptions-you may be able to find what you need online by searching carefully and being persistent. Same thing with determining the cause of your issues. Just keep trying.

I have appointments like this with most doctors; I have one excellent nurse practitioner as my primary doctor (she has been the most supporting primary doc ever and listens, make recommendations and send referrals to follow up with those recommendations) I have a neurologist (unfortunately he is a junior doctor at the VA and doesn’t get his recommendations for test approved and at great lung doctor he is doing his best to improve my lung functions that were and are being damaged my my pain doctors medicines). Thank you for sharing and I hope someday they will teach doctors that we are at there mercy and we are trying to figure out why we hurt or have other medical issues.

How does one know if you have a autoimmune Disease? I seem to be chasing pain since my first back injury in 1978, I now have memory, urology, scaring pain from spine nerve surgery, protein in my spinal taps, migraines, and lung issues. How do I get a team of doctors together and figure something out as a team; they each treat there area of expertise, but not my whole body.

This is just my opinion but I think the only way doctors work as a team is through a health facility or teaching hospital that has a multidisplinary teamwork approach -- "Multidisciplinary teams (MDTs) are the mechanism for organising and coordinating health and care services to meet the needs of individuals with complex care needs. The teams bring together the expertise and skills of different professionals to assess, plan and manage care jointly." --- What are MDTs and why are they important to integration?: https://www.scie.org.uk/integrated-care/research-practice/activities/multidisciplinary-teams

Lots of ways to work with your doctors and that can be a challenge sometimes but it's a two way street and not always the doctors fault. Lots of tips and suggestions here: https://patientrevolution.org/how-we-revolt and other pages listed under the How We Revolt menu at the top.

John I have yet had the time to formally tell my story... When I do I will let some info on a dr. who at this time do not want to name as he is going perform surgury on my legs and feet. It is a compression release operation. I am very excited for it. The DR. I met on a zoom call thru a neuropathy group I am in. He has developed this and had some very good response with some of the people on my zoom call. Also I am the one with the use of 10mg of oxycodone used everyday and many times a day. it is the only thing that works for me. I cannot wait to get off em.

Thank you, @johnbishop, for saying this!

Our health care system is complex and complicated. In some cases it works very well and in other instances it is broken. Everywhere, there is room for improvement. Unfortunately recent changes have added more problems rather than improvements, from COVID to insurance companies changing the way reimbursement is done. Doctors, like patients, are frustrated and begrudging the additional complications.

Health, health care and care require a team effort that includes patients and doctors as well as other parties like insurance companies, administrators and more. You may have a grievance with a specific provider. However, it is not helpful or accurate to paint all physicians with the same brush. The vast majority of physicians and clinicians care deeply for their patients and work tirelessly to find the cause of elusive symptoms, research new treatment approaches, and educate people about preventative health so they can stay healthy and live well.

Amen

@colleenyoung Your comments are so accurate! Over the years I have seen the way doctors have their "hands tied" more and more as they are sometimes pushed to limit their interaction with patients, or are reprimanded for going outside of what is perceived as their individual guidelines. If my nephrologist-at-the-time hadn't gone outside his parameters in 2014, my ultra-rare kidney disease might not have been diagnosed properly. Not long after that, he was told to limit time with patients. He thought that was wrong, as he needed to get to understand and educate them, and eventually left that HMO to strike out on his own.

I have seen my medical teams change, not wanting to "step on the toes" of others more specialized, and this year alone I have seen numerous specialists to help get to the bottom of a new issue. Yes, it took more than 6 months, 4 different people, and countless tests/scans. Do I wish it could have been fewer people, sooner, fewer procedures? Of course! But I know now that each was needed to narrow down the possibilities. I did a lot of research on my own, to understand the reasons behind everything, and that alone helped tremendously in alleviating some of my frustration. Knowledge is power.

As patients, we bear a responsibility, also. We have the right and requirement to speak up when things are not going well, but we also have the need to understand how medical practices have changed,
Ginger