So the day after I was diagnosed Dan and I headed up to the ER at St Vincent’s Hospital as had been suggested. I had packed my bags for a 5 night stay and had arranged for the kids to be with their Dad. We arrived and handed over the letter from my GP. We didn’t have to wait for too long until I was in a bed with a drip, on a heart monitor and waiting for the Neurologist to come to meet me. (These were the first of numerous ‘sticks’ that I would have over the coming months- so many blood tests and infusions and cannulas! I have learnt which are my best veins and which ones only work sometimes. Hands hurt the most!!)
We waited and waited- and he never arrived. Eventually they called him and I was able to speak to him on one of the nurse’s mobile phones. He explained that he didn’t do visits to the hospital on the weekend and it was a misunderstanding between my GP and his registrar that had landed me in hospital in Darlinghurst (two hours from home) on a sunny old Saturday.
He was apologetic and told me that as the numbness had been happening for 3 weeks the steroids wouldn’t help me at this stage. He told me he would be able to see me on Tuesday in his rooms- and then he suggested I go home and enjoy the weekend.
So I was unhooked from the drip and the heart monitor and we headed out to Darlinghurst for the first of many lunches together in a funky little café.
When we got back home we were a little lost. Yesterday I had received this huge diagnosis and now here we were back at home on Saturday night. We had a very quiet night.
We invited Dan’s parents, Carol and Andy, over for coffee the next morning and told them about the diagnosis and that we had been to the hospital but wouldn’t see the Neurologist until Tuesday. Obviously this was a huge shock and one of those conversations that you hope to never have to have.
Later, Dan and I sat out on our back grass looking out at the lake and watching people looking carefree and walking past along the cycle way. My plan for the coming week was to just continue as normal with the exception of Tuesday when we would go to Sydney together. And continue as normal I did. I worked each day at school and also did 10 hours of supervision sessions. It was a huge week and looking back now I wonder how I fronted up to work on Monday!
Tuesday came around quickly and we drove back up to Darlinghurst and had brunch together in another funky café. Then we went to meet the Dr. He looked at my MRI’s- showed us all of the lesions and pointed out the accompanying inflammation. It was a little overwhelming and I needed to sit down while he explained all of this. He did the usual neurological exams. “Touch my finger, then your nose”, watched me walking in a straight line, watched to see how my eyes were focusing and tested the strength of my hands. I explained that I was noticing improvements with the tingly, numb fingers on my right hand. He asked about work and I explained all of the hours and tasks I had been getting through in recent weeks. His advice was to continue doing my usual work and activities.
He advised that we could try a wait and see approach and briefly talked about possible medications. This conversation was so brief and the prospect of medication seemed so far away into the future that he didn’t even give me the glossy brochures that I would eventually become very familiar with. I did have some blood tests, including the test to check whether I was JC virus positive, which turned out to be pretty lucky as the results take three weeks to come in. The blood sample for this test is sent to Denmark for testing. My blood travels overseas more often than I do!
The Dr. reported that he thought we would be able to meet in 6 months to discuss medications which Dan and I thought sounded great. Unfortunately MS had other plans and we would meet again much sooner than this.
It was just 16 days before we would see him again.
Thanks for reading,