The Neurosurgeon signed off on my EMG muscle testing after I emailed for his input/approval. The appointment on the 6th was too overwhelming and I forgot to achieve this!

Due to my cognitive decline, and overall disappointment in the last couple appointments, I had Suz join me for this one. To help me get some key points on the table and some guidance on treatments and next steps etc. In particular, I wanted to see how I could get shifted into the Public system at the Mater so that collaboration could happen with my CF specialist (Lucy Burr) and to save some money!!
Q&A to follow below.

The neurologist did my muscle testing. Keep in mind the office looks like its from 1920, my lungs also felt like dusting hadn't taken place since then either! We went into a little bunker like room that Suz pointed out (post meeting) looked like it should be in a museum! I said it felt like a war torture chamber!! Straps and electrodes placed on my legs, needles put in and a zapping device was placed in various spots along my feet and legs. They flung around like crazy whilst the oldschool machine/device/contraption was giving live results. All whilst I flinched and spasm’d around on the hospital bed that should also be in the museum!!

Suz and I regret not getting a sneaky photo or video of this.... its something we will never be able to describe well enough to give others the right image!! A definite 'had to be there' moment.

In a nutshell, he was testing if I had the likes of MS or MND, and these were negative on the day. He explained though that any positive result for any condition using the EMG testing could be suppressed by the medication I was on (plasma, baclofen, and steriods). So negative results weren’t necessarily true results of what might or might not be happening. But overall he was happy with the result.

He was now referring me to Stefan Blum at the Mater public who is a researching scientist and clinical neuroimmunoligst. He said my condition was now outside of his capability and Stefan would be best. Stefan would be able to study me and work out what exactly I'm facing and be able to tinker with treatments. He did warn though that people with primary immunodeficiency can take 4-7 years to get a diagnosis for their autoimmune conditions.

I was happy with this outcome as my prior research had lead me to Stefan being my preferred new guru as he has 10 patients in Australia with SPS.

Q&A

Q: The public system usually takes a year to get into. How long did he think it would take to see Stefan?

A: He explained my case would be considered critical care needing treatment now. He would hope not too long at all. And given my CF specialist has asked for a copy of the referral she would be able to escalate to Stefan.

Q: Can he provide a letter to support my NDIS application. SPS is a listed condition within NDIS.

A: Guidelines in Australia are that he can refer to my SPS as a provisional diagnosis (based on my blood test and aligned symptoms) because more needs to be done to get to the nitty gritty of what my autoimmune diseases are/will be and that this needs to be done by Stefan. He would write a letter as such to explain my PID has now denegerated further and lead to autoimmune conditions and has been treated with baclofen and will be ongoing and I will continue to degenerate etc. I felt better knowing he could give me something in writing and we could get back to the NDIS application.

Q: How much can I take of the Baclofen in a flare up? Is it like ventolin… ie a drug I can take that’s quick acting?

A: It is a well tolerated and researched drug. MS patients routinely take up to 80mg. He'd be happy for me to get up to 75mg per day. I was also to move from 30-40mg this week and then reassess every 2 weeks with Dr Reece. The movements in my daily dose need to be slow. But I could take a big dose for an emergency flare up, although it could take up to 90mins to kick in.

Q: Do I present to emergency at a hospital in the event of a major episode like happened with my neck?

A: No, that would be dangerous, as would taking an ambulance. My situation is so rare and unique and mainstream treatments given by the wrong specialists would be risky. I am to ring Dr Reece on his mobile and we go from there. Worst case I am to present at the Mater Public seeking Stefan Blums and Lucy Burr's input. Naturally if I can’t do any of the above or get ahold of Dr Reece and it was a life threatening emergency I’d present to hospital… and hope we can communicate my rare situation.