Trudi and I saw the neuroimmunology gurus (SPS stuff) at the Mater on Tuesday 30th. It was a little deflating and why I've not written so quickly. Before the appointment Trudi got a 15min run down on my goals and we shortlisted my top 3.

Dr Laurie McLaughlin called my name and I was a little confused given I was expecting Rueben Beer again or Andrew Swayne (who I was originally referred to). Up front I asked her to clarify her role, she was one of the registrars (I think) and she had a gentlemen with her who was in training who joined us too. She was going to be running the appointment and would consult with Rueben towards the end.

Trudi could sense the look of confusion and disappointment on my face, hopefully only sensed by a best friend, not the actual doctor! This was because when Jo and I had been in for the first appointment in November Rueben had said whilst it was the public system I'd only be seeing him and Andrew. This notion was quickly proven otherwise.

I did my best to not be outwardly disappointed and we gave Laurie and her colleague a turn. Luckily for everyone she was lovely and thorough and had excellent bedside manner. She put me through a range of physical tests (more than my first trip) and noted some were improved on last visit, and I knew they were. But nice to hear it.

She had to deliver the news to me that the UK tests were not back and by the look of other tests returning it could be another 3 months. This was hard to hear. I'd been putting a few things in life on hold until I had these results in case my treatment pathway needed to change.

All my other tests results and scans were back and there was nothing we didn't already know
e.g. couple little tumours in my lungs which we always keep an eye on, and some spots on my brain which I've had since narcolepsy days. The bloods did reconfirm my SPS condition, so it wasn't a once off or false positive.

So Trudi and I moved into my top three topics:
1) Management plan for incidents like what happened in post op and ICU, in case I present to emergency or have something similar happen again.
2) My voice box spasms and needing a reliever.
3) My nausea and in particular not being able to drink 2 drinks without significant nausea and a hangover the next day.

We discussed these topics in length and also my current baclofen dose and how I'm managing. Laurie floated the idea of a combo treatment with a form of valium. Doses in both baclofen and valium are the go to treatment for SPS, so I wasn't surprised this idea was raised.

Laurie then went and consulted with Rueben and he came in to say hi and discuss. The 3 topics above.

1) It felt like we were going no where with this. Basically I'm to take an extra 5mg wait 90mins and then another 5mg etc. But nothing was going to be written down or given to me i.e. like when you get an asthma management plan.

Trudi could sense I was getting frustrated. I think she was too! So she piped in.
"I think what Loren is trying to say is that she asked for these things and they were not given to her and she was left in a really traumatic state for far too long. What is the protocol hospital to hospital. Is there a protocol that should have been followed at Greenslopes when she was in post op and ICU". [I was thinking, go Trudi! Thank you. The word 'protocol' is bang bloody on!!]

Rueben as professionally as possible said, yes, there is a protocol and that is they should have had a neurologist attend to her and they have one there. And they should have contacted us. We have shared patients and this is what should transpire. He then said, I'm sorry Loren, you did everything right, you were just let down and there is nothing else that could have been done. It is just a relief you had a direct line to Dr Reece and he stepped in for you.

Laurie then offered to cc me into her letter to Dr Reece and it will have the management plan and I can use that for future hospital admissions etc. Thank you Laurie (although, 11 days later I still don't have that email).

2) They know nothing about this and diverted me back to my ENT and CF specialist to discuss.
This was when my mind literally shouted at me "FMD, do these people have any SPS patients? Or know anything about it?"
Instead I said I had found an article on it and relievers and how frustrated I was I couldn't put my finger on it to share with them. And yes, I would take it up with my ENT and CF.

3) They didn't believe baclofen alone was the cause of my nausea. They did say I've got a cocktail of meds now so it is more likely related to the cocktail then the specific new player in the mix. They said that my body should learn to tolerate baclofen better over time. I'd also been through surgery and anaesthetics etc etc
All I heard was "be patient, there's nothing that can be done".

I walked away deciding that I'd get serious on a stomach rehab again, with my diet and try heal myself that way.

Overall
Rueben said he didn't want to bring in valium, he wanted me to keep dabbling with baclofen and the 5mg management dose.

I was feeling a bit frustrated that this is where the meeting ends until the next quarterly visit. In my mind it is basically no progress.

Rueben then offered me the clinical nurses email details and said I can share the SPS voice box papers there and I can ask for treatment help there too. i.e. that is how I can make some contact between the quarterly appointments.

That gave me some comfort. That felt like 'the win' for the whole hour.

Trudi and I left and we debriefed over a coffee and juice. Our takeaways:
1) They are caring and do give me an hour. So that is a blessing.
2) Perhaps I was given Laurie as there were no new results, or perhaps I would have got her anyhow. But she was excellent and Rueben did become involved. So perhaps I can cope with this.
3) It's probably unfair of me to expect them to be more knowledgeable given its a 1 in 1-2m disease. Which would mean me and 1 other in the city of Brisbane. Instead it sounded like they were open to me drip feeding them information.
4) No news is still good news. There was nothing 'bad' from the appointment. Just nothing 'good' haha

Trudi's key takeaway was:
"Far out Loz, you can't do these meetings alone, they are so complex. And next time there needs to be a 1 hour prep session" hahaha
She noticed HOW MUCH is covered and how quickly you are lead down another path and how easy it is to forget to say things and things that are important (plenty I forgot to tell them which could have changed the treatment pathway!).

We agreed from here in I need to prep better, like a bloody board meeting.

So I headed back to the coast to my lovely house sitting gig and decided to start house hunting seriously. No point putting my life on hold any longer. Frustratingly the rental market is worse than ever. What was once a $650 1-bedroom beach side apartment now starts at $800. And there are basically none available. This is the cycle:

1) I get notified one has just dropped on the real estate app, I check if I like it. I enrol for the inspection tomorrow! Yep, they just have them tomorrow. Drop all plans to make it work.
2) By the night of the property landing or the morning of the inspection, the inspection is cancelled. It's been placed 'off market'.
3) Oh and 95% are furnished, so I've had to come to terms with likely needing to sell my stuff and use theirs.

FMD.

So now my approach is:
1) Call the agent as soon as the next one drops.
2) Have tracked down my old agent (she's at a new agency) and she's going to keep me in the loop.
3) Have emailed larger buildings with managers on site to ask for short term stays or long-term stays.
4) Short listing Agents who seem to be the key players and writing to them.
5) If I find one I 'semi-like' I will call and ...... Well, it's illegal now to offer more or money in advance, but I suspect that is why nothing is making to to the inspections as it must still be rife!

I'm house sitting until the 23rd of Feb.... so time is ticking.... and it is very much unknown where I will be next!

Oh, and through all of this, a few days after seeing the specialists, I had a major spasm in my right foot so deployed the 5mg 'action plan' which worked well...... but I ended up with toxicity again. Chronic sleeping, shallow breathing, forgetfulness/lost memory, cognitive issues, low moods etc.

Dr Reece picked up on this via a teleconsult for new scripts! He could hear my breathing was off and I wasn't the upbeat version of myself. Thank god yet again for Dr Reece. I just thought I was super run down from trying to return to work and independent living. I wasn't even going to bring it up!

He confirmed he’d not had any letters yet from Laurie. And he said he is unhappy about my current baclofen dose and the plan I've been given. He says this current situation shows I’m far too sensitive to it given most people in my situation or with MS are taking 75mg and I can’t handle 20mg. He’s concerned toxicity can have devastating implications. I trust his opinion, given he has written over 150 published papers and 2 books on drug abuse and toxicity and implications of drugs on the body.

So, he's got me dropped back to 15mg (from my daily 20gm) and might want me back at 10mg. We are keeping a close eye on it. He'd rather I find a level of stiffness/rigidity/pain I can handle day to day and use the 5mg additions for my tougher days and episodes of spasms but then drop them back off once they end (which is super quick from all examples so far).

Rather than a higher dose to avoid any stiffness/rigidity/pain and spam episodes. He said he'd rather we find the lowest possible dose as a baseline and then use the 5mg's like Ventolin for my troublesome days. Almost the opposite to Asthma Management Plans where you increase your preventor to not have attacks and do not need to rely on Ventolin.

Basically, it's a game of which problem would you prefer least!
How much stiffness/rigidity/pain would I like to put up with day to day versus what level of toxicity issues can I tolerate in the moment and long term.

So, we are trialling a few things and then I'll write an email to the clinical nurse who supports the specialists to get their thoughts.

Ideally, we’d find a way to have me have no stiffness/rigidity/pain day to day. And just occasional episodes of spasms. But we are quickly realising that is going to be unlikely. Luckily, I’ve got 7 years match fitness to the daily symptoms so I know I can handle that and the lowest dose of baclofen does take the edge off!

Let's see where the seesaw in our experiment of dosing lands. It's anyones guess right now!
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Photos of some highlights include:
1) Celebrating the acquistion and launch of a business in Solomon Islands
2) Some 'signs'
3) Working in style and enjoying the 1 beverage haha