After my disappointing appointment yesterday, I had the following exchange with my PCP via email, below. It just made me feel hopeless. I know she thinks I need exercise and anti-depressants and Prilosec – she has suggested all three to me before. NO AMOUNT OF PROZAC AND PRILOSEC CAN FIX A TUMOR. It boggles my mind that she honestly thinks this crap is going to solve my problems. But it is good to know where I stand with her so that I can plan according.
Thankfully, I generally respond well to negative reinforcement 🙂 I was down last night, but I woke up mad as hell and more determined than ever to figure this shit out. The fact that my PCP doesn’t think there is any “major diagnosis” coming my way was just the smack I needed to get my motivation back. Just because she (and the others I have seen so far) can’t figure it out does not mean there is no diagnosis. It just means there is no diagnosis YET.
The moral of the story, folks, is that if your doctors don’t believe in you and aren’t willing or able to put in the work to figure out your problem, MOVE ON. You are the one that gets to decide when to stop looking for answers, not your doctor. You are the fat lady – don’t start singing until you are better.
I am sorry to hear that you are not feeling well.
I have spent quite a bit of time reviewing all of the notes & studies of your various specialists. I have spoken with many of your specialists and reviewed in detail the notes from The Wizard (though I was unable to reach him directly by phone or email; his staff seems to screen his calls).
All of the specialists agree that it is unlikely that any additional testing will shed any light on your symptoms. Even The Wizard indicated in his notes that he thinks it is unlikely that a hormone problem is contributing to your current symptoms.
The specialists I have spoken with are in agreement that the best way to proceed at this point is to focus on improving your overall well-being. The specialists consider it unlikely that any additional tests will uncover a major diagnosis such as a cancer or hormonal imbalance.
I have a number of thoughts about how to improve your overall level of wellbeing-more energy, less short of breath, less coughing. Please make an appointment to come in to see me. It would be helpful if your husband, or another trusted friend or family member, could come with you to the visit.
The one specialist I have not been able to contact at all, or receive any notes from, is your psychiatrist. This is because of privacy protection that keep his information separate from the rest of your chart. If at all possible, it would be wonderful if you could arrange for Dr. X to fax me a treatment summary.
Please tell me you are kidding. The Wizard’s last dictation clearly says he is concerned about a carcinoid and wanted me to get a biopsy. I DO have abnormal bone turnover markers and hormonal abnormalities. And I was in the ER in a hypertensive crisis in March. My blood pressure was 222/119 and I was flushing profusely. This is all in the record too. There IS something wrong.
I understand your inclination to just give up on this and suggest I get therapy and go for a walk or whatever solution you think will magically fix this. But let me tell you this is EXACTLY what I went through last year. Countless doctors ran one or two tests and concluded nothing was wrong. Several radiologists looked at my pituitary MRI and told me there were no tumors. It wasn’t until I found someone willing to do enough of the right tests to get to the bottom of it that I finally got diagnosed. When a better MRI was taken and an experienced neurosurgeon looked at it he saw TWO tumors. And when they were removed, I got better. My prior PCP and a whole pile of specialists told me I needed anti-depressants and I should just go get fresh air. And they were wrong.
I am happy to have my psychiatrist reach out to you. He saw me during the entire mess of diagnosis last year and he knows my case well. And I am happy to come in and see you and discuss measures you have in mind. But if you don’t actually believe there is something seriously wrong? I don’t think this is going to be helpful.