Hello @stuckonu. I see Teresa is there for you and I really can’t improve on what she says. The only thing that I feel doctors sometimes miss is when the stress of all this navigation tends to cause a chemical imbalance that can lead to a very treatable depression. Have you ever had experience with this or have any of your professionals talked with you about an evaluation? Nancy

So Teresa, I hired a health care profession who is very positive and send morning greetings everyday. How can one not be grateful for her presence? I even tell her often, maybe everyday! On the same theme, she had a near fatal event so I do things with and for her. I’m very grateful that I put my complaint bag aside and it makes me feel good to do it. I never forget that bag that I leave behind and I’ve already heard from many to “ fa’getta bout it “ maybe if I believed in wishes or hope I might get dementia so I can just put it away.
I’ve become very negative about the whole medical field in general and as much as people like “ sharing “ their concerns and maladies they don’t like hearing a trashing of the system that they surrender to.
So, for instance I carried the 7 page report about the biopsies done in 2017 where “ MGUS “ was mentioned on half of the pages. My VA doctor ordered follow up testing and everything came back “ negative “ Good right? But as I saw it I wanted to know why the hospital that did the biopsies never discussed, showed concern, ordered more definitive testing as: the nodules were discovered in a cervical MRI the lead to the biopsies with no mention of Hyperparathyroidism and their GOOD NEWS was NO CANCER! Also no plans going forward. I have no voice and when I told the same doctor the no one seems interested or concerned about my voice he replied: “ I resent that! “ 1 hour with him. He listen to my heart from my back. No blood work or urine test when the last test had: blood and calcium in urine, extremely low vitamin D and two other chemical in my blood suggesting Hyperparathyroidism. I’ve been taking 50,000 units of D2, every 4 days 2000 Units of D3 liquid several times a day in coffee and juice fortified with D and Calcium, but perhaps his “ RESENTMENT “ effected his behavior.
One week later my concierge doctor did the D test and reported that it’s on the low side of normal.
I wonder what DXs come and go?
One last curiosity: I did a search for most missed diagnosed illness are since two best friends suddenly passed away from misdiagnosed ALS. Pretty scary to me