So one of the big reasons we wanted to move to Italy was the healthcare. Not just socialized medicine, but also the quality – WHO often rates Italian healthcare as one of the best in the world, and my research indicated that the doctors are more knowledgeable, access is easier, and there’s more viable treatment options. And, in M’s case, Parkinson’s disease is fairly common in Italy, so I hoped they would know more and maybe have some new ideas.
Since M is on disability, we needed to get her established with a doctor this month, so I decided to do some research and we would simply pay out of pocket. I found a couple of options for doctors, but we set up the appointment with one – he speaks English (which was necessary since we might be describing weird symptoms), he has a wicked good resume, and has a lot of experience in motor disorders. Beyond that, he made it to the top of the list because of gut feeling. When it comes to M’s health, my gut feeling has been pretty spot on, so I’m going with it.
We had the appointment the other day, and my gut led me true again. He was amazing. He heard what we were saying, I didn’t have to debate the diagnosis with him (happens far FAR more than you’d think), and he seemed to care about making sure she’s on the best treatment plan possible, considering our circumstances. I’m going to go more in depth about that, but I really want to showcase American vs. Italian healthcare, so let’s talk about our experiences in America first.
American Healthcare (in M’s situation)
I’m going to focus solely on the Parkinson’s treatment, because I see other posts when we get established with other doctors in the future. M’s Parkinson’s diagnosis was complicated due to her ortho problems. In hindsight, she’d been showing symptoms since her early to mid 30s, but a lot of them had been chalked up to her orthopaedic issues (we only realized that when they improved on the Parkinson’s medications).
In August of 2013, she got pneumonia, and the general doctor put her on antibiotics, and she got better, and then worse. So we did more antibiotics and the same thing happened. And then a third time. But by the end of the third time, the symptom that was really standing out was this vertigo – it wasn’t really spinny, M describes it as rocking-on-a-boat, but it was strong enough to cause her to fall or pass out – clearly a big problem! The GP tried a number of different dizziness meds, but nothing was really working except Prednisone – not ideal, but our only hope at this point, even though it only worked to some degree. The GP referred us to an ENT, who said it was crystals in her ears, but that treatment didn’t work at all. So we were sent to a neurologist.
Now the first neurologist was terrible (if you live in the Raleigh, NC area, email me and I’ll tell you who so you can avoid them). The head of the office saw her and diagnosed her with “reverse migraines” in about 5 minutes, and we never saw him again. He prescribed a medication, and sent us home – no tests, no real exam, and he’d never really listened to what we were saying. Now, I’m a researcher – I research everything – and I’ve never found anything on reverse migraines, nor has any other neurologist we’ve ever spoken to heard of them. But we tried the meds – and she got worse. I was missing class constantly and had to take her to work with me, because she had to be so closely supervised or she’d fall and hurt herself. So I made another appointment (December of 2013) and we saw a nurse at the neurology office, and she changed the meds. No exam, no doctor in the room, and they still weren’t really listening. So I knew something wasn’t right, but I don’t have a medical degree, so I was hesitant to say something.
I went home and researched. As in I sat down with a list of neurological conditions and started at the top. If she had NO symptoms of the disease, I ruled it out. I cleared my work schedule and school schedule for a week to do this. I researched non-neuro conditions that could cause dizziness – infections, parasites. I had a four page list with reasons for each condition by the end of it, and we went back to the GP who I liked. She was sooo kind, taking the time to comb through the list with me – “not this because” or “a possibility, maybe…” and set up a bunch of tests. Bloodwork, x-rays, urine, MRIs. So many tests. And they kept coming back negative. But, in seeing M so much, the doctor diagnosed her with ADD.
That diagnosis was a turning point. You see, my general rule had been to rule out diseases where M had no symptoms – but there was a hidden rule where I ruled out things that were too terrible to think of. But when ADD made it onto the table, I mixed that into the symptoms list and started over, and one disease had moved up in likelihood.
My great-grandfather and just about all his siblings had had Parkinson’s disease, and for some reason, the family was under the impression that while my uncle was at risk for it, women couldn’t get it. We also thought it was this terrible deadly disease, that it only happened to really old people…just a lot of misconceptions. But a lot of Parkinson’s patients have ADD, and now the disease was looking too likely. So I did more research. And when I didn’t like how accurate it was, I did more. M had a fear of Parkinson’s from seeing it in my great-grandfather, so I did everything I could to rule it out – but I couldn’t. I could not find one single reason why this wasn’t the most likely condition to describe her issues. I’d made note of all these symptoms we had always ignored because they were ortho problems – shaking hands, a shuffling walk. She’d developed difficulty swallowing since the pneumonia. So when we had the next appointment with the crappy neurologist (or more accurately, his nurse), I went in armed. I had studies, symptoms lists, research. I’d documented for a whole week every symptom she had and when and why. And I asked about Parkinson’s. “She doesn’t look Parkinsonian” was the response I got – like, what, if it’s not tattooed across her forehead, it’s not possible? We walked out and drove across town to the GP.
I really can’t reiterate how awesome our GP was. This was not her specialty, and now we’re talking a big-boy disease, but I explained that the neurologist had blown us off, and I didn’t want to wait for another referral, and in all my research, I’d learned that doing a medicine test was a really good way to rule out – or in – the condition. Could she PLEASE just put M on the meds for a trial period? She saw I was at my wit’s end, worried, terrified, frustrated, and she wrote the prescription. Within 3 days, M had shown notable improvement.
With that, we were referred to a motor disorders specialist at the University of North Carolina, and we were sitting in her office within 2 weeks (May 2014)…where she immediately said she didn’t think it was Parkinson’s, the medicine probably hadn’t actually helped, and she could refer us for a DATscan (the definitive test) but insurance likely wouldn’t approve it as it wasn’t medically necessary. Then she tried to stop the meds.
Hell no! We got up and left, and I started looking for another doctor. The National Parkinsons Foundation named Duke University as a center of excellence, so I researched the doctors there and found two that I thought would be good options. With yet another referral from our very patient GP in hand, I called Duke and begged for the first available appointment with one of the two I’d chosen – they said it would be 6 months. Fortunately we got a call and were in even sooner.
At this point, I’m not leaving anything to chance. I pulled M off the meds for a week prior to the appointment. I researched the crap out of Parkinson’s disease, and anything related to it, and printed it all off. I created a binder that had a timeline for…well, basically M’s entire life. All of her surgeries, illnesses, when she hit her head, her car accidents. I put in there every diagnosis she’d ever had, documentation of every risk factor. Family medical histories going back three generations. Copies of all of her medical records and test results. Detailed documentation of how we’d gotten to that point. I filled up a three inch binder. I asked G (M’s mom) to take the day off and go with us, so that I had someone else in my corner. I dressed up so that I looked as intelligent and powerful as possible, in the hopes he would take me seriously – the doctor we were seeing had just been named head of the department, and I was a young looking 20-something. We arrived two hours early, so I could get coffee and prep more. I practiced the conversation we would have.
I was over-prepared for no reason. Dr. M looked impressed by the very existence of my binder, but he started by having M walk up and down the hallway. Once up, and once back. We sat down in the room, he said it looked like Parkinson’s and we needed a DATscan, which she could have three days later. If the results came back like he expected, he was going to refer her to another doctor who specializes more specifically in Parkinson’s, and we walked out of there with that appointment already scheduled.
Now, I know this sounds like a success, and our experience at Duke certainly was. But by this point, M had been on high doses of steroids for a year because other doctors hadn’t listened. And when the first neurologist tried to bill me, I laid into them, and they had the BALLS to question her diagnosis, despite the DATscan results! Suffice to say, I went coldly angry and they wiped the bill in exchange for me not suing the pants off of them (which I still regret).
After the diagnosis, though, we still had a long road ahead of us. We had to get medication regimens worked out, therapies, more testing, and so forth. It took months, years even, and I had to battle the insurance company at every turn. I refused to go outside of Duke for medical care except the GP, because they were the only ones we trusted anymore, and Duke was an hour away from the house. And then…just as things started to calm down, the nerve pain started.
Nerves And The MTHFR Gene
M can’t feel the outside of her skin from her knees down, something we’d chalked up to nerve damage from her ortho surgeries. But all of a sudden, she was having burning pain on the inside of her legs and feet, very severe, constant burning pain. We went to the GP – no luck. We went to the neurologist (who we loved) – no ideas. It didn’t seem like Parkinson’s, was all he could offer (and I’m not blaming him for that). She had nerve tests done…no luck. We saw a different neuro specialist who knew more about nerve pain – no luck. M was threatening to cut off her feet or kill herself. So, as we walked out of one appointment, I tried a different approach and we went to the emergency room.
My thinking was, commit her. 72 hour psych hold, and that’s 72 hours when she can be highly drugged, while the hospital does every test under the sun. She’ll be pissed at me when she gets released, but at least we might have an answer.
Turns out, the hospital wouldn’t do any testing while she was committed, and wouldn’t have been willing to drug her for the pain. They gave her a dose of morphine, which did not help at all, and they threw up their hands. This was the one bad experience we had at Duke. I said I was concerned she was suicidal, she said she couldn’t live with the pain, and they hemmed and hawed and sent her home. The saving grace was one brave medical student who suggested vascularitis, or a genetic condition, before the attending shut him down. I begged them to do tests, but they said they would have had to admit her to a department and they didn’t know what department to admit her to. My pleas of “pick one” fell on deaf ears, and they sent her home.
It wasn’t vascularitis, but that medical student reminded me how often our healthcare system shuts people down, rather than actually try to help. And with that reminder, I started researching again. I started the list of every single condition that could cause the neuropathy M was experiencing. I demanded bloodwork for vitamin deficiencies, and created a spreadsheet to compare a decade’s worth of bloodwork to the normal ranges. I pulled her genetic report and combed through it with every resource I could find. I read medical journals and called Duke and the Mayo Clinic asking for advice. One condition slowly rose to the top of the list.
There’s a gene called the MTHFR gene, and yes, it’s exactly what it looks like. If you have a mutation on this gene, it is a motherf***er of an issue. Not a whole lot is known about it yet, but it can cause neuropathy issues, and is suspected to be connected with Parkinson’s. Basically, your body can’t turn inactive forms of nutrients into their active forms – specifically, folate into methylfolate. My mother’s genetic report indicated she had this mutation. Her bloodwork indicated chronic vitamin deficiency issues. We headed back to the neurologist and asked about the gene, about a specialist referral, and if it was ok for her to go on a methylfolate supplement. He’d never heard of the gene (and this wasn’t his area, so it’s not his fault – he did research on it immediately), he gave us the referral, and approved the supplement.
By the time we saw the new specialist, M was already seeing improvement, but the specialist confirmed my research and google-diagnosis. And that was really it – there was nothing else to be done.
Cost Of Health
Before I wrap up my soliloquy into American healthcare, let’s discuss the cost of all of this. It’s rude to talk money, but I’ve never been all that polite. M’s insurance cost $458 out of pocket every month once she was retired on disability – half of that was out of pocket when she was still working. Every GP appointment had a copay of $25, specialist copays ranged from $50 to $150. We paid 20% of any testing. She was on, at the height of the medicine regimen, 14 different prescriptions. Some were only a $25 copay and would last anywhere from a week or two to 3 months. Her Sinemet, for the Parkinson’s, was about $300 for 3 months. Her carbidopa, which kept her from puking on the Sinemet, was $1100 for 3 months. That’s with insurance – without, it would have been about $6000. Because so many of the meds were controlled, she had to see a doctor every time she needed a refill. She also needed monthly bloodwork to ensure there were no other issues arising from the meds – which meant monthly doctor appointments and copays and testing fees. The year it took her to get diagnosed with Parkinson’s, I’ve calculated as costing somewhere in the vicinity of $10,000 out of pocket.
And those aren’t the only costs. While the GP was around the corner from us, Duke was an hour away. The only shop in town where I could get her methylfolate (Amazon ran out fairly often – and the methylfolate cost about $15 to $20 per month) was an hour away. The testing facilities were generally at Duke or in North Raleigh, 45 minutes away. I had to take time off work. M was out of work for about 6 months with the Parkinson’s diagnosis. She needed a scooter to be able to walk at all for a while, and needs it now for long distances – that was an $1600 copay. The printer paper I used for my research so I could argue M’s case with the doctors. The research time. The times she fell and I had to miss work to take care of her. The 100 lbs she gained from being on steroids for a year. Keep those costs in mind.
Let’s Wrap This Up
We were fortunate to encounter some great doctors in the States, I won’t deny that. But we also encountered some terrible ones. I think that’s true anywhere in the world, but I have concerns that had we not been limited to doctors approved by her insurance, we would have had better luck earlier. Could the first neurologist receive benefits from a pharmaceutical company by prescribing migranes and the associated medicine? Would a doctor have been more willing to do tests, had he not been worried about battling with the insurance company? Would we have been able to do more sooner if we hadn’t had to worry about the cost?
And considering the volume of patients American doctors have to see to maintain relationships with insurance companies and such, are they really able to keep up with the newest research? Because there are definitely points when it didn’t feel like it. And the cost of those meds…those are American costs – Sinemet does not cost $300 a month out of pocket in Italy, much less with insurance (and I got generic in the US and name brand here, by the way).
I feel like in America, there is so much focus on capitalism, that we sacrifice health and well-being. We hear about drug-seeking patients, but we don’t hear about the underdiagnosed or misdiagnosed. We claim our health system is so much better, so much quicker, but don’t discuss that it’s not efficient or accurate (or really, quicker or better). Think about this, and check back in tomorrow for our Italian experience (much shorter, but already more promising).