Tired of the gaslighting

I used to work in a major hospital, ICU, and ER and I * very much * recommend becoming familiar with the Patient Advocacy Department as soon as you begin care anywhere. Take whatever contact cards and information packets they offer.

Oh boy, it is SO GOOD TO HEAR you!! I am 77 and feel exactly as you! I go to one doctor, not a MD but a DO. The only thing that bothers me is he cannot admit me to a hospital. I must remember to ask him about this. If I remember, they break my train of thought with the same questions.
Thank you for telling it like it is!

How do you feel about Concierge doctors?
I have one. A very expensive one that I pay a monthly fee to have him available all the time.
Well, that’s what I have to do in order to get the prescription pain relief!! I’d think about elsewhere but everyone is demonizing opioids.

How the heck does one get access to their patient portal? I’ve asked my doctor and he shook his head “No.”. I got no answers to why not. I do not know how to access my own Doctor information let alone a government one. I HAD THOUGHT we all were to be able to access our information but apparently not? I live in Florida. I would REALLY love to know the answer to my questions…anyone?

That is so sad to hear. But health care has become a for profit only business and the doctors know how to schedule 2-3 patients (Medicare) in the same time slot. Maybe more. If you complain they offer you the option to seek another doctor. Which does nothing for anything except push me closer to a stroke. Just kidding, but YOU ALL KNOW!

I’m in Michigan and have MyChart for a lot of them and there is a different portal app for some doctors that I have. I have another doctor that on their website they say they have a Portal but when I asked for they say they don’t. my cardiologist told me that they passed the law two years ago that everyone should be able to access their medical records through a portal or it’s a sign of $1000 per patient. Next time I go to the doctor I can’t access it to. I’m going to let them know because he’s the only doctor I can’t see what’s going on.

THANK YOU! I have so far lost all hope of seeing my records from mostly my current one but, also, previous doctors I no longer see.

I had no idea about a “law” and most likely either my doctor is unaware..I can’t think of any other reason can you? I mean, if he knows he is being illegal then why else would he deny me any access. To ANY portal? I also asked about the Government Portal as it disturbs me as I have caught typos in office records. He told me no. Because I wanted to know what is being said about me. I take the awful opioids. I also have worked in a medical office many years ago. They can be judgmental.

My husband died years ago. I had a different doctor at that time. And she had an opinion regarding my husband’s death. I found an opinion in regard to me as to how “well she is handling his death. Perhaps, too well.” I couldn’t believe it. Never did I think a personal opinion would be written like that. Never!

For instance, there is a huge difference between describing
your patient as having children or a pregnancy when not true!

It IS possible my present doctor “missed” the announcement regarding a law having been passed. And, it has been probably several years since I asked. I’ll try again!

Thank you so much for this information ❣️

The healthcare system is totally wrecked, that’s for sure. The day of the “family doctor” who actually knew you, is over.

Having said that, I do believe the doctors are in a bind. They know you need your coverage, and they know what they have to say to get tests and treatments covered. I questioned some discrepancies on my records when my symptoms did not exactly match what had been recorded.

I was, (still am) in great distress and discomfort from Long Covid symptoms, but thankfully I have experienced very little pain. I noticed in my records “pain” was always listed in my complaints. When I inquired about the mistake. I was told that without including “pain” my claim/coverage would probably be denied. So, it might be, at least partially just compliance to get your coverage for you.

Of course I do not know your whole story, and what you feel was misrepresented.

The doctors have to jump through hoops too. It is wrong, but it is the situation.

I love the idea. In fact, I had a Dr. I adored who went that route. If I could have afforded it I would have done it in a heartbeat. Her fee was actually very reasonable, but I am very low income and I like having a roof over my head, so insurance it is!

I can certainly understand this experience.
I have a rare disease called achalasia, and got a massive run around for years until after I moved to a new community and a doctor who didn't know me made the correct diagnosis. This was in Vermont I came from Oregon. Two doctors in Oregon actually diagnosed my underlining problem as anxiety. They'd clearly never heard of achalasia, which is a disease of the nerves and muscles in the esophagus, which control your ability to swallow. Having anxiety when you can't swallow and no doctor is telling you why isn't surprising. For them to say it was my underlining problem was clearly wrong.
After finally getting the correct diagnosis I had to move back to Oregon. The pandemic and just started. My problems were not over. I made the mistake of choosing the closest doctor to me; which is probably not a good idea with a disease this rare. I had two surgeries at a clinic in Portland to try and correct the problem. They both failed. I found out after I requested my records about year after leaving this doctors care. She'd kept the results of key diagnostic test from me. It's one that tells them how severe the condition is. It's important because it tells them what therapy to recommend. The test was inconclusive in me. I also found out in the post op examine three months after the fact, my doctor had seen so much evidence I would need a second surgery that she actually choose to abort the endoscopy. I didn't hear anything about this for three months and found myself in a second surgery a week after she told me in an online appointment. There were signs that this doctor was over her head with me and wasn't telling enough, I wish I'd paid more attention to. At the time the pandemic was still pretty bad, and when all this started I had never even heard the term achalasia. The second surgery took longer to fail, but it clearly did about a year after. By that time I'd figured out I needed to go elsewhere. I tried going to the Mayo Clinic in Minnesota. It was a horrible experience. I still don't know what exactly happened. The doctor who ordered all the tests I had was nowhere to found during my trip. He only repeated tests I'd already had. I had one doctor tell me I needed mental health treatment for because of the pain was still having. I left with maybe the most expensive diagnosis of a yeast infection ever. I'll never go back to Mayo.
Finally a friend of mine recommended what I wish I'd done in the first place; OHSU; which is a teaching hospital. The experience wasn't perfect, but it was much better. My thought is maybe because of the educational aspect of teaching hospitals the doctors who work at them are better because they come to the profession with different motivations (I'm certainly not claiming to know this for sure.) They were very thorough, because lot still needed ruled out. And they did have to repeat some of the tests I'd already had because the disease was still progressing. At the end of the diagnosis process the surgeon in charge took all the testing they'd done and my complete medical history to a committee they have made of Gastroenterologist and surgeons (there were ten of them total) to decide what to recommend that this point. Unfortunately they determined unanimously, that I was in end stage achalasia and my only hope would be a full esophagectomy. I got a second opinion from the Cleveland Clinic. It was done on Dec. 6 of last year and took almost nine hours.
I'm expected to make a full recovery but there are still some unknowns. The pandemic was obviously a bad time to try and do this but doctors shouldn't guess when making diagnosis they should tell you they don't know, and they absolutely should not be keeping information from you. Though teaching hospitals do seem to be better they are painfully slow in trying to get care from. My mom is immigrant and I'm actually considering leaving the country if I make a full recovery. It can't this bad everywhere.
Doctors inability to simply say they don't know is absurd. I'd of all the specialists I saw through this experience (I've lost track of how many that was, It's over five years five major hospitals in four states.) I had one who was level me. He said Achalasia is disease we still don't what causes it, we don't know what causes some patient to get a lot worse than others. We have some theories but known of us have seen enough patients to know anything for sure and count any patient experience out.
Arrogant doctors are the most dangerous. If you think you might have one trust that instinct and find someone else if you can