"Diagnosis"

I was diagnosed with Parkinson’s Disease (PD) early last year. I suspected I had it for about a year before I finally demanded to go see a neurologist after 4 local doctors said I didn’t have it. I had tremors, loss of motor control, rigidity, loss of sense of smell; I believe all classic PD symptoms and all on my LHS. In my opinion, I should’ve been referred on my first visit, simply due to those symptoms but I had to tell the fourth doctor I wanted to see a neurologist. 

PATS have flown me down 4 times to see my private neurologist, who is also a movement disorder specialist, but now have refused my latest claim, I believe because policy demands me to utilise the visiting specialist! So I have to either pay the exorbitant airfares from Karratha to Perth or see a specialist in Port Hedland, a 2.5-hour trip each way. So I had my husband drive me over. The specialist eventually came out, they looked a mess in my opinion; as though they hadn’t even done their hair. I felt they were surly, but so was I, because according to PATS, this neurologist said they wanted to see me and make their own diagnosis. 

When we went in, they asked me why I was there? I said because I have Parkinson’s and they asked again why am I there. To which I responded:  because you told PATS you wanted to see me and diagnose me yourself!

They then said why would they want to see me, look at the list of patients,  and said they haven’t even had breakfast and so the appointment went; both agitated at each other. I felt they wouldn’t let me finish my sentences before cutting me off. They asked what other medications I was taking, then, when I couldn’t remember the names of a couple, they waved me off and said don’t worry, It doesn’t matter. What the?

They continued on and did a quick check on how I walked, talked and wrote, then turned around and simply said they don’t think I have Parkinson’s’. (I needed an MRI and blood tests for my first diagnosis to rule out other things, however, it seems they have made this diagnosis with nothing). I laughed and said what, I’ve already been diagnosed by 2 neurologists in Perth! To which they still said, well I don’t think you have Parkinson’s. I then said ok and asked what do I have. They said they didn't know, so I asked what do I do now. They advised continuing on my medication if it stops my tremor.  

I find this extremely upsetting and irresponsible in my opinion, to suggest continuing meds that I apparently don’t need! I’ve written a sarcastic, perhaps mean, email to PATS and told them about it on the day of the appointment. I received a reply to it 3 days later telling me that the Senior Medical Officer will be in touch. Nearly a week after I sent my email and I still hadn’t heard anything. Now, I don’t know what to do. I believe, I obviously do have Parkinson’s but feel I’m not able to get the care required as PATS won’t pay my fares for me to see my usual neurologist! This has caused me such stress. I know I’m early in my diagnosis, but this is the type of thing that I believe would cause major stress and medications to not work correctly, in a sufferer further along than me. 

When I mentioned to PATS, what if I was unable to drive? I was told there was a bus service. I feel the bus probably wouldn’t be able to get a person there and back in one day, so I believe accommodation would be required (extremely expensive up here, in my opinion) or the patient would be waiting around for ages for the bus to take them home. Again, this would cause major stress for a PD sufferer. Can you suggest any other avenues for me to take, please?