Let me first start by saying what I am going to write about has become the norm. It's not unique to this business. It's fresh in my mind since I just returned home from a follow-up appointment. Are you ready for a game of "Who's On First?"
I've had a ton of things go wrong & weird symptoms & just a plethora of poo. Dr. Milford has kind of become my defacto primary care doc because he's the only one that pays attention and follows up. Primary care kind of just dismisses something suspicious as nothing. (In fact, Dr. Milford did recommended follow up after abnormal pre-op X-Ray when primary care refused and "guaranteed" it was just "CYA from radiology")
Today I went in for a follow up visit and only had to wait an hour beyond my appointment time then another roughly 30 minutes to check out while developing a headache. It's not a migraine yet but moving in that direction.
The doc started with the normal reading of the notes and repeating back the symptoms. I've had some improvement with one issue and not so much with others. He got to the part about wanting to refer me out for another opinion. He suggested UCLA. I said "I've already been there" his response "When?" My response "When you sent me there last year". This is the third appointment where he didn't have the results of something from August 2016. Okey-dokey. He moved to the chest CT follow-up for which I was grateful. That's when I learned maybe why I have this throat pain. He said I needed to see ENT. I said I already have and I had an endoscopy and I had another imaging of some sort done that I don't remember and everyone says there's nothing there. Doc says enlarged lymph node. Yeah.. and? The thing about Dr. Milford is he is thorough so that's good. The problem is doctors don't talk to each other, medical offices don't share all the records and people drop the ball ALL the time. Even if you end up with a doctor that gives a you-know-what, he ends up impaired by everything else that gets botched.
Then the doctor asks if I've seen the headache specialist. I already covered that with his staff at intake but maybe he has to ask again or maybe they didn't tell him. I told him no. I waited for him to ask why but he didn't so I offered it up. I got the prior authorization through insurance, I contacted the headache doctor, they didn't have records, I called Silver State and they said they would send the records. The only sent partial records. I called the headache specialist to see what was up and they said they didn't have complete records. I called back Silver State and they said they would send again. I called back headache specialist and they hadn't received and didn't bother to call or fax Silver State to ask for exactly what they needed.
Oh yeah.. in the mean time I had a MAJOR surgery and have complications so all that was drawn out over enough time for someone to figure it out but nooooo. It's now months later and I have verified insurance has authorized the referral. I called the headache doctor and guess what? He's no longer accepting new patients...BUT I might be able to see another doctor but headache doctor #1 still wants my complete records so I send them a signed release form to request them. Two weeks pass and I'm in Dr. Milford's office today and they tell me there's no request on file and ask me to sign a release form so they can send records to headache doctor #1. I signed that today. They said in the same breath they hadn't sent records. See the inconsistency here? I called and verified they had been sent and was told they were. In person they said they hadn't sent them. Maybe they are hiding with the UCLA test results?
In the mean time my insurance has changed and not only have my premiums gone up but so has the co-insurance and I have sucked up all my savings on medical bills and paying the rent because I can't work due to another injury and all the headaches make it even worse.
Sooo... here I am about a year and a half after experiencing something like a small stroke and so far no one has figured it out. I think I have! Hey, I'm the one living in this body. I may no nothing about medicine but I know how to troubleshoot. It's process of elimination.
So here we are. No diagnosis. No treatment plan. No money. All drugs caused worse side effects than symptom relief. Removing myself from some drugs actually improved some of the symptoms but I had to be overdosed by an Endocrinologist to figure that one out.
I could have seen a headache specialist last year but since the paperwork wasn't complete despite my best efforts, I may or may not be able to see one this year depending on cost.
Before I just gave up on this mess I would spend at least 4 hours a day on the phone babysitting medical staff. If you aren't sick when you start down this path, you will be about halfway down that winding road!