The Story So Far... part 2

More doctors, scans and radiation. Fun!

So we left off last time with me in early 2022 waiting for a neurology appointment.

I ended up waiting 9 months. The neurologist I saw did a series of physical examinations and confirmed that I was in the right place. Although it was good to hear after 3 years of investigations by health professionals from 4 different specialities, the fact that I had landed in neurology was somewhat worrying.

The main suspect at that time was something like Multiple Sclerosis (MS). I’m certainly a prime candidate for that given my gender, age and family origin - it’s more prevalent in people from northern climes. I got referred for an MRI which happened a couple of months later, and had to wait a further 4 months to get the results. All clear, indicating no MS.

The next step was to send me for a PET/DAT scan. I was told this is what they used to look for things like Parkinson's, that was the first time the condition was mentioned.  I waited once more.

5 months later, in August 2023, I went back to the hospital for the scan, which involved being injected with a radioactive substance then being sent to wander for a couple of hours while it reached my brain.

Given that I was radioactive, I was told to stay away from pregnant women and children. Difficult in a hospital. I took myself off to the farthest corner of the hospital cafeteria and tried to write up my uni course work, which was due imminently.  I then got taken in for the scan itself, which was in a machine similar to the MRI.

This time I got an appointment with the results within a couple of weeks. That was the first clue that something was amiss. Nothing had happened that quickly with the NHS for the last 4 years.

It was the same neurologist I saw again. She very gently but directly told me that yes, we found some abnormalities, yes of the kind we usually see in Parkinson's, but no, you don't fit the usual profile of someone who gets Parkinson's, but yes that is the most likely explanation. I was told I would be referred to a different team who specialised in unusual presentations and I should await an appointment with them. The doctor had been very nice but I was basically told all that then sent on my way. The whole appointment took less than 10 minutes. 

I found myself outside the neurology block stunned. I started crying. 2 burly security guards asked if I was okay. Of course I wasn't but what could I say?  They couldn't change what I'd just been told. They couldn't change my abnormal brain.

So then, more waiting for this other team. I'd even forgotten the name of the team so was left in limbo for another 9 months. Sort of having a diagnosis, but also sort of not.

During the wait for the appointment with the specialist team I had to continue life as normal. I told close family and friends but still felt I didn't really have anything concrete to say.

At the end of April this year I had the appointment with this specialist team, who turned out to be another neurologist just 3 doors along from the previous one. He did yet more examinations then explained that all the tests and scans definitely pointed to Parkinson's which he would confirm in a diagnosis letter and inform my GP. This was a more thorough discussion. I can’t actually remember most of what was said but I didn’t feel rushed and the doctor took time to explain things and answer my questions. He talked a little about the possible causes - environmental vs genetic and possible treatments. I decided to wait until the next appointment to discuss medication as I felt I needed more time to digest things. He said that I would be put on a waiting list to get a specialist Parkinson's nurse, however guess what? The waiting list is very long. He also referred me to neuro physio, but I've yet to have an appointment with them either.

Despite the endless waiting, I have been extremely grateful to have the NHS for all these appointments and scans, which have been entirely free of charge. As a self-employed freelance worker on a fairly low income, I know that in many other countries I’d be either bankrupt, massively in debt or having to crowdfund. The delays and waiting have been frustrating, but at least I know I’ll get what I need eventually. Likewise if I have to go on any medication I won’t have to worry about the cost of these, as prescriptions are free Scotland.

So that’s pretty much been my diagnostic journey to date. Next time I’ll talk a little more about how my symptoms progressed including 2 weird and unexpected ones. Stay tuned!