I’ve been waiting for my specialist appointment since my discharge from the hospital, which was organised about 7 weeks ago. I was full of expectations. I thought this appointment was the start of ‘getting better’, finding answers, and having a professional champion in my corner.

It was not a good start to the appointment. There was no accessible parking which meant a considerable walk to the clinic. This exacerbated my symptoms, and fatigue set in. I was tired, and before I even had the opportunity to talk to the specialist, I was at my worst.

The paperwork

To continue with these difficulties, I needed to complete approximately 20 minutes worth of paperwork on entry. I struggle with handwriting. On the best of days, I limit myself (I’m messy, it hurts, and I prefer computers) due to cramping in my hands. I normally pre-empt this and prefill all information at home electronically before any specialist appointment. There was nowhere to sit comfortably, so I needed to hunch over.

Needing to hunch again exacerbated my symptoms, and the pain started to flare up.
Due to my car being over 10 min walk away, I had no opportunity to grab some pain relief (I know I should have been prepared!). I had to wait my turn. Forced to sit uncomfortably and remain somewhat positive as this might be the appointment I get some answers. Or at least an extended long-term plan.

It didn’t start well

The appointment was 45 mins late; I was stiff and tired. I was not in the mood to head in for my consultation. I pulled myself together, walked into the consulting room and started to tell my story. Noting this specialist saw me for the duration of my 32-day stay in the hospital and then prior similarly two years earlier. The discharge summaries I emailed earlier were not in my file. Again, my medication list was emailed as part of my referral and was unavailable (note he prescribed me all of my new medications). I needed to email to doctor during my appointment for an updated list.

All the standard questions, tests, looking at my ‘spastic’ gait (yes, that’s what the doc said). I know it’s a medical term, but I struggled after that; we have moved on from those terms I thought in the ’80s & ’90s. A walking speed test was done, and then the standard reflex test.

Apparently, I’ve got Hyperreflexia, ‘i.e. an overactive or overresponsive bodily reflexes’ in my legs. Weird that I have never heard this before. My legs have always responded quite dramatically to the reflex test, but I assumed this was ‘normal.

Your legs are spastic aren’t they

Once again, your legs are really ‘spastic’, aren’t they? Noting that, yes, in fact, this is a medical term. However, other terms now are less confronting and offensive (tremorous, neurasthenic, shaking, over-responsive, involuntary movements, your legs are showing signs of spasticity etc.)

It’s getting real

Possibly not angry with the specialist for using outdated terminology (although I would like him to try and update his vocabulary).

The more I document, reflect, and share my story, the more I accept that this is a permanent condition. Yes, there are ways to ease my pain, improve mobility, reduce muscle tightness etc. The simple fact is I have a disability that I and others around me will need to adjust to this constantly. This makes me angry sometimes; sometimes, this makes me frustrated. But as we have done as a family for more than 22 years, we dust ourselves off and get up. My mantra is to keep moving forward.

Back to the story

I need to get an MRI (I hate them, truthfully, I find them claustrophobic, and I get significant anxiety.) As my mobility, mainly my ataxia gait, looks like Multiple Sclerosis (MS), he wants to ensure nothing sinister is happening with my brain and back etc.

Getting an MRI is complicated due to my spinal cord stimulator. So I need to find a particular type of machine and jump through a few more hoops before I find a clinic that will do one.

We finished the appointment with a prescription for another medication (my 6th addition in the past two months). Talking through the drug side effects (to help reduce muscle stiffness and assist with mobility). It will take 12 weeks to taper the medication to the correct dose. I need to watch for numerous symptoms (mostly fatigue and mental health), and if exhibiting them self taper down the drug. I need to wait until I see the doctor again in 3 months. (a little nervous about this one)

So you don’t have depression or stress? That’s unusual, are you sure?

As I stated at the beginning of my blog, I needed to complete copious amounts of paperwork while waiting for my appointment. Part of these tests was to score pain but mainly tests to capture my current mental state and stress levels.

The doctor looked at me, puzzled, and said, you don’t have a mental health issue. I don’t understand; what’s your trigger for FND?

We spent some time talking about my initial back injury. The impact this had, and how this incident started 22 years of chronic pain. He pushed a few times more, and then, ok, So the trigger is pain? I said yes. I continued and informed him that, in fact, approx. 20% of FND patients’ root cause is not trauma or mental health related. I am in the 20%; yes makes it a little more complicated to treat, but that’s me.

I left with more questions and no formal diagnosis on paper (I had been asking for a letter from my specialist to confirm disability). More tests to complete, oh and $500 poorer.

On a positive note, we have a plan for at least the next three months. So let’s get stuck and tick those actions off, one at a time.