This was my first appointment with Dr Dan McLaughlin to discuss the positive SPS blood test and to do muscle testing to ascertain what other autoimmune diseases I might be dealing with.

However, once the neurologist reviewed my MRI results regarding my c5/c6 spinal bone issue protruding into my spinal cord he was uncomfortable proceeding with the muscle testing.

Naturally I was disappointed to have a temporary road block here, but understood his reasoning. He explained the muscle testing triggers spasms in my legs and body and it might not be appropriate (aka dangerous) to do that whilst my bone was touching the spinal cord. He asked me to seek approval from the Neurosurgeon before proceeding further with this.

We used the time to discuss my last 7 years of symptoms.... muscle stiffness/rigidity/spasms and weakness in my legs and torso, voicebox, neck etc along with my cognitive issues. He was relieved to hear I'd undergone my own physio and rehab on a weekly basis for the best part of this time. And that I was already on weekly plasma treatment.

Those are 3 of the 4 key things to treat SPS or other related issues and he explained without it I'd likely have been in a wheel chair by now. I had been fast tracked a couple weeks earlier to start Baclofen (an anti muscle spacticity drug that is considered well tolerated and researched and used often in the MS population). I'd had positive results to that within the hour! We agreed to move my dose from 20-30mg in a couple weeks as a slow progression is required.

He then explained whilst we are waiting we could run a blood test on my creatine kinease. He explained that when muscles are in a constant state of spasm/rigidity etc it causes damage to them that can be irreversible and this test would let us know how badly damaged mine are.

He said this test is routinely used by elite marathon runners after each race to see how much physio and rehab and overall recovery time they need to repair before the next event! And basically I've ran a few marathons without knowing haha.

By now I was thanking (and he was too) my lucky stars that I had serendipitously met Paul and Ang from BL Physio on the 7th December 2016 at the Running CEO's launch! By chance I have been doing all the right things with weekly physio and rehab (started 27th April 2017 when my issues flared right up!).

We finished the meeting on a bit of a sombre note, with him explaining that my Primary Immunodeficiency will lead to numerous autoimmune conditions and cancers as time progresses. For some reason I'd kinda had it in my head I'd get one of each... seems that was naive but ignorance has been bliss.

On the upside I've been getting most of the right treatments so that gave me a leg up!

We left the meeting with me to book back in once my surgeon had signed off on my ability to do the muscle testing.

For those looking for some comic relief to end on…there was a funny moment in this meeting. He said, Loren, you came to see me about these issues back in 2018. At the time your cognitive was particularly bad. You were headed off to Greece for a month and then after a months R&R there you were to come back and see me to progress these matters. Why didn’t you?

I responded: well, the thing is, my cognitive was so bad I completely forgot you were even on my team until last week!! Rather than beating myself up, Dr Reece and I recalled that it was a pretty epic period health wise. The week after seeing you I had a broncoscopy and found HSV in my lungs. We got onto treatment for that. I flew out to Greece a couple days later. The day I got back Dr Reece and Dr Heiner let me know that bloods had also come back whilst I was away that showed I had CF. I then commenced flights in and out of Melbourne to see Prof Wilson at the Alfred. And I basically ended up down that rabbit hole until today….

He had a laugh. And said thanks for getting me back in the team!!

Oh, and the photo is me and some fake flowers in the waiting room haha