Handling Misdiagnosis
Have you met being misdiagnosed with doctors over time with your disease? How have you handled or better yet rebuilding trust with other doctors?
For me, a second opinion was my go-to, even though the truth of the diagnosis was somewhat accurate the gaol of treating right away wasn't. I was told you have multiple myeloma, not "You have smoldering multiple myeloma and we watch and wait". There's a huge difference!
your experience has again, as many encourage to get a second opinion. My question (worry) is timing of searching for that opinion. Do I wait until suggested time for treatment? 🤔... I just answered my own question. Wait? Why? Second opinion could agree with first opinion, may need earlier treatment or none at all. Many possibilities due to misdiagnosis. Yes, I'm a forever advocate in the second opinion when warranted. I know many people have an issue with prolonging the inevitable, but it may be that early response for a brewing disease, will not exactly change what is happening. A better quality of life is one of the main goals, as we know many of these drugs are a lot to muster through. Actually here's a great breakdown of the reasons for that watch and wait system.
Yes, the possibilities can go either way because of misdiagnosis but of course, no one wants to be in the position of an inaccurate call at a late or too early response.
https://blood-cancer.com/treatment/watch-waitThis is true. There are so many factors and it starts with if you're feeling not right, finding someone who can look into the matter sooner than later. I have a similar issue as well, but in my case, I'm not sure what type of specialist to seek... That's a whole other issue playing doctor when your doctors don't even know. (side-face) : /
I was misdiagnosed three times. One time was by one of the most reputable places in the world. OR SO WE THOUGHT. For 15 years my rheumatologist told me the diagnosis they gave me when I was 17 was wrong. Well, it turned out many years later that they were right all along. What a trip! Then with my cancer, they gave me two diagnosis before they took another THREE MONTHS to find the right one! It just shows how hard RA and cancer are to diagnose. Keep on keepin' on, DPM Yeah that's a trip, Dan! Sometimes it may feel like that guinea pig and trial and error scenario. I don't think anyone wants to end up in this situation, but unfortunately, it happens more than usual. Sometimes these ailments are harder than others to determine, and we have to stay persistent in care or find some kind of answer, even when it leads to what we don't wish to hear. Best!
For me it was a lack of follow up. I needed a second opinion for the cause of rashes (chemo allergy), a second opinion for increase in infections (iGg deficiency) and a second opinion for hip pain (ankylosing spondylitis). There are consequences that my oncologist just isn't quick to relate to and my family doc is often confused by. Asking for referrals to other specialists has helped me manage mush better.
Yep Maria, It's unsettling when all doctors are not in sync, but it makes us appreciate even more those doctors that try to go out their way to figure the puzzle out. As there are so many links that may or may not relate to one thing or not, it can be a needle in a haystack in finding the answers, especially when some of the doctors are not aligned in expertise. I'm happy to hear your referrals led you to a better team that is better suited. Best : ) 
I have found it helpful to apply a bit of pressure on the MDs by directly asking them how they are teaming up and I make sure they all get copied on test results.
I hold that family MD's are ok for routine stuff - if you have an ongoing issue going to a specialist early on is wise. If your GP is continuing to try new things it is time to get a different opinion. Best motto is " Trust But Verify" when you are not sure
