Journey to a Diagnosis: Part 3

My PCP saw me much sooner than expected. Usually it takes a month for non-emergency visits. I believe it was divine intervention that I got an appointed within 48 hours.
The night before the appointment, I sat down & made a list of all the symptoms that made no sense. Profuse (without cause) sweating, changes in skin, sleep issues- eventually, I’d filled ¾ of a notebook page. Then I had a mini meltdown of pity.
But, honestly, at this point, all I wanted was to know. Tell me something- good or bad. So I went to the appointment with zero expectations for results. I handed her my paper, told her my hunches, & waited. Her answer? ‘Bingo!’
She was the first to admit that she’s not a neurologist nor is she advanced in knowledge of Parkinson’s. However, she did take a few classes on new information available just in case she’d every needed it. She’d never had a Parkinson’s patient before. But, relying on what she did know, she said we may have finally found our problem. I was relieved. I wasn’t scared or panicked- just relieved. She made a neurologist’s appointment with a new neurologist. She warned that he may not agree & to be prepared. If we didn’t get an answer from him, she said we’d find someone who would deny or confirm.
Again, unheard of, but I got an appointment with the neurologist within 2 days. To say he has no bedside manner is an understatement. He made me walk back & forth down a hallway. He pulled on my limbs & made me smile & frown. In his very thick Russian accent, he told me ‘Maybe’. I pushed for a more definitive answer. He declined to give one.
Instead, he insisted that I get an experimental test in which isotopes are injected into the body. Stunned, I took the pamphlets & walked out of the exam room. As an afterthought, he came back with a stack of medicine samples & told me to take these ‘Just in case’. His advice was to begin using Parkinson’s medicines to stave off further symptoms until we got the test results.
I asked him again, ‘Are you saying I have it?’ He shrugged & walked away. I felt violated & like cattle walking through his office. His receptionist informed me that his personality was ‘just that way’ & to not be insulted. He doesn’t mean anything by it, she explained. So, I went to my mother’s & told her the news. She was floored. Both of us? It couldn’t be.
I suggested we go together to another doctor. She chose not to. I understand. She is in denial of her symptoms. She’ll come around. In the meantime, I was about to learn a lot more about neurology & its politics than I could’ve guessed.
Right after my visit with Dr. ‘I Don’t Know’, I had my disability hearing. I’d been denied previously which is very, very common. We presented all the evidence & began the 8 week waiting period to hear back.
In the meantime, I learned as much as I could about this test that the new doc wanted done. It’s called a DAT Scan. According to internet research, most neurologists don’t use it. The only place nearby that does it is in a larger city, a 45 minute drive. It takes about 6 hours. When I called the center to discuss it, they told me to be aware that it’s known to cause thyroid cancer. Excuse me?
So, this doctor wants a test done that no one else does & it causes cancer? No, thank you. I had no peace about it & my husband was adamant that we weren’t doing it. I made an appointment at the center to discuss it further. Two days later, my insurance company called. Their answer was point blank- forget it. They deemed it experimental & refused to pay for it. I took this as further confirmation from God that I wasn’t to have the test.
I called new neurologist & told his office what my insurance had said. The secretary said she understood & that occasionally that happened. She was very pleasant but matter of fact about it. She made an additional appointment for me to see the doctor.
Eight weeks to the day, I got a letter from the ALJ regarding his decision. He decided in my favor. Praise God! Now we wait for the benefits to begin. Considering it’s the government, only God knows how long it’ll take.
We were happy & only really went over the judge’s ruling. I didn’t re-read my testimony/evidence pages until a few days later. That’s when I got a bit angry.
My testimony was deemed credible which is fantastic considering I’d told the absolute truth. I read my PCP’s report which was supportive & accurate, too. When I got to the last neurologist’s report, for the visit I’d just had, with the man who’d shrugged me off, I was very confused. His lengthy report said clearly, that I did have Parkinson’s disease. It maintained that he made his diagnosis based off visible evidence, his knowledge of the disease & my medical record.
The court had actually waited on his paperwork because my appointment had taken place right before the hearing. They wanted all the facts. I appreciated that. What I don’t understand is why this new doctor was so stubborn about his findings & wrote in my medical record the exact opposite of what he’d said?
To be blunt, my first thought was that he had some sort of deal with the clinic. Maybe a kickback of some sort. It made me angry that he’d be willing to purposely put patients in jeopardy. So, I called the only doctor I trusted at this point- my PCP. Her explanation was a lot nicer & more ethical.
In her heart, she believes he was terrified of malpractice. By refusing to give me closure, he was protecting his own interest, that’s true. But, she felt, if he said yes, & I got a second opinion saying no, then I may sue him. I’m not that type but he wouldn’t know that. So, even though, he honestly felt the diagnosis is Parkinson’s & he believed it enough to name it & record it in my medical record, he was afraid to say it.
This test was his out. The only problem is that this test is far from failsafe. Parkinson’s isn’t the type of disease a simple test finds. Even the meds aren’t 100%. Some cause more symptoms than the disease!
Currently, I am med-free for the PD. I’m relying on the Great Physician to guide me in the right direction. I changed my nutrition to include foods rich in dopamine (which is the chemical we PD people don’t have in our brains) such as Japanese chard. I also began coordination exercises to help me stave off tremors.
So, what was the point of all this? Do encourage you to do your own research. Don’t settle when it comes to doctors. Don’t give in to tests because a man in a white coat said to do it. Be your own advocate. But, most of all, in all your health needs & scares, ask God for wisdom. If you don’t have peace about something, do not do it.

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