Jo and I arrived into Brisbane with just enough time for a quick lunch across the road from the hospital. I had my first beer in what must have been weeks, just to settle the pre meeting jitters.

The new neuroimmunology clinic is literraly in the same section as my CF clinic with Lucy Burr, so it was all familiar surrounds.

We saw Dr Andrew Swayne come out and take another patient away so we knew our man. Not long later a different guy comes and calls my name. I thought he was the prescreening guy but realised pretty quickly he was a specialist. We all stopped and worked out who was who and turns out he was Andrews colleague and the two of them run the clinic and I would see both of them over the years to come. Stefan was only Mater Private so that is why he was ruled out.

Now we were on the same page Rueben asked me to go through a from birth history. We then did a heap of physical exams. We then covered how I felt about SPS as a dignosis for me. I explained I felt for time it matched 100% of my symptoms whereas historically with dignosis you might tick 8 out 10, this I ticked all 10.

He then set me up to go do a stack of bloods which we did afterwards at the hospital. One will go to the UK and could take 3-4months to come back. It is for a condition which presents the same as SPS so he wants to rule it out. There others were to check for any other diseases and issues with vitamins and the like. Very long thorough list.

He is organising for a full head to toe set of CT's and MRI's to rule out any physiolocial issues like tumours that could be also trigger the same types of symptoms.

Then when these all come back we consider what they tell us and then likely do a lumber puncture to check for other weird anitbody issues.

We discussed my neck MRI and he took us through the scan. He said my positive result to the cortisone injection in positive indicator for a great surgery outcome.

He wants me to push on with 10mg baclofen. There are not other treatment options for me for SPS right now. I'm on them all and the other options would give me greater drowsiness etc. He's hoping I'll balance out, its not been long enough since the toxicity, plus need the surgery and then we reconvene. In the event of a flare up of the SPS I can take another 5mg of baclofen and wait and then again and wait etc. i.e. as a reliever. Hopefully I wouldn't need much to back off a major episode. He explained that I've had an extra sensitive response to Baclofen in a good and bad way. i.e. best relief from SPS on a low dose and that the level of sensitivity may mean I only need a really mild dose anyhow.

He was kind enough to write a really useful letter for NDIS which everyone helping with is stoked about.

I was able to confirm Lucy had indeed made this appointment happen. Collaboration 101. Exactly what I was hoping for.

I'll review tomorrow with fresh eyes for any detail from the 1.5 hour session that might be missing in this post. Very tired from a long day up to Bris and back.