Today we drove to Dunedin for the long awaited specialist appointment to try and figure out what’s going on with this pesky foot.
Background
Around 6 months after the knee replacement, roughly the middle of last year, I started having foot trouble (the other one!) Heres the progression (around 8 weeks from being ok to cycle 100’s of km to being unable to walk at all.)
- Started with ball if foot going numb when I cycled.
- Progressed to whole of foot going numb.
- Then came the nerve pain. I didn’t know what nerve pain was till now. OMG.
- Pain became 10/10 unbearable – given nerve pain meds. Dosage has increased ten fold to keep things under control.
- Unable to walk. Unable to cycle (at all).
I had a nerve conduction test which showed up reduced nerve signals and possible nerve damage so I was referred to a neurologist. We chose to pay for the consultation to speed up the waiting process.
Neurologist appt
The neurologist appt was in Dunedin. British guy who is, apparently, the no 1 expert in the South for this type of issue.
He asked a heap of questions (including some slightly unusual ones) to try and identify or eliminate initial obvious causes.
Then he tested me from top to toe, left and right sides separately. Starting with eyes, sensory checks, moving on to motor and co-ordination tests with arms and hands, moving down to legs, testing the same range of things finishing with sensory checks on both feet.
Conclusions
He concluded from all the testing that the symptoms I was presenting with were inconsistent with usual expected nerve damage related common conditions and were following an unusual pattern. Due to the numbers on the nerve conduction test he did not believe that the problem was demyelination which was what I had been told a few specialists ago. What exactly is going on? Unsure.
From here it is a case of going through a process of elimination. The obvious place to start is the lumbar spine. So I have been referred for a highly specialist blood test and an MRI of my back. The blood test is looking for inflammatory and auto immune markers, the MRI is looking for disk damage.
At first the idea of having something wrong with my back that could result in surgery (again) sounded horrific, but.. if it is spine related that could at least be reversible.
If it turns out to be some type of peripheral neuropathy (a very generalised blanket term that covers a million different things) then I could be stuck with this permanently.
So, looking at it like that I’m kinda hoping I am looking at a back operation as the most favourable solution! 🤦🏼♀️🤔🤷🏼♀️
Melanie Magowan 