I never really intended there to be so many parts to this story! So if you’re still with me, Thanks! I’ve wittered on quite a bit, but I’ll keep going.
Once I returned from holiday at the end of September, I waited for what felt like ages for my first appointment with a Neurologist. It was a strange period of time, I didn’t know what was wrong. I didn’t have somebody to contact. I spent time wondering if I’d been forgotten and lost in the system. Much as the NHS have been amazing, the lack of communication has driven me mad at times!
Whilst Dave and I had been on holiday, my Mum and Dad had booked a cottage for a week in Pennistone. They’d booked it so it was big enough for my brother and Dave and I to go and join them for a few days. The plan was, my Mum and Dad would travel up on Friday, as would Matt (my brother) and then Dave and I would either join them later that evening, or Saturday morning. We were due to go on 3rd November, but as luck would have it, my first appointment with a neurologist ended up being on the 2nd November.
My Mum and Dad absolutely made my day when they told me that they were going to be coming up the day before so that they could come to my appointment with me (well, one of them at least – they had their new dog, Reggie, in tow!) It was like it was all meant to be.
In the end, it was my Mum and Dave that came to the appointment with me.
I really liked Dr Tyne. She didn’t know whether or not I had been told what I was having investigated. All she had was a letter from Liverpool telling her that I was being referred and why. So the first thing she asked was if I knew why I was there.
I then went on to give her a potted history of symptoms and experiences, not unlike the story I’ve told via these blogs. It was just as well Mum and Dave were there, as they managed to fill lots of gaps as I was forgetting so much. As the symptoms were tumbling out of my mouth, I started to realise just how much wasn’t quite right with me. I astounded by how much I had let slide, and not been to see anybody about. Everything individually seemed so small and insignificant, but all together, I realised just how NOT right everything was.
She took me off into a side room, leaving Dave and my Mum in the main room. Here, she seemed to be testing my reflexes and reactions. She asked me to follow her finger with my eyes, she pricked me with a pin to see if I could feel pain, and she tapped what looked like a tuning fork and tested for how long I could feel the vibrations in different parts of my body. She made me stand still with my eyes closed, walk along with one foot in front of the other, made me push against her with my leg and did that thing where she tapped just below my knee to test my reaction. My performance in these tests certainly varied!
After completing those tests, I was told that I’d need to go for more tests. She wasn’t prepared to commit to MS as the diagnosis at that stage and wanted to rule out other possibilities, for example Lupus. Even so, through our discussion, she kept on coming back to MS.
She suggested that if I had relapsing remitting MS, I would likely be eligible for medication, as I’d had the required two relapses in two years. In order to determine if that was the case though, I needed to have blood tests and a further MRI scan on my spine.
Unless my symptoms were completely characteristic of MS, I’d also require a lumbar puncture. This was the bit that scared me the most, and I didn’t hesitate in telling her so. She told me that at Salford Royal, where I would be going, they do them five times a day and I’d be fine. This helped a little bit, but not a lot. I still wanted to avoid it if I could!
Before we left, she asked us if we had any questions, but with nothing more to ask, we left.
I struggled to hold it together as we made our way out and once again the floodgates opened. Seeing that it was hard for my Mum to watch me go through this, really got to me. I felt awful for her and my Dad.
Dave came with me to get my bloods done. I’m not a fan of needles but I’m certainly not terrified of them. The seven vials of blood they took off me was a lot though! It went on forever.
A few weeks later and I had the results back. In the spirit of taking whatever wins you can, not that I was worried about it in the first place, I was thrilled to find out that I didn’t have Hepatitis, Syphilis or HIV. I did however have extremely low levels of Vitamin D and needed to get them replaced by my GP.
A bit of Googling told me that Vitamin D deficiency is normal in this country, but particularly low levels were common in MS patients. In all honesty it felt like another nail in my fate.
Whilst waiting for an appointment with my GP, I got some high dosage one a day, vitamin D supplements in Tesco. That dosage is not high. What is a high dosage, is twenty times the strength twice a day for ten days and once a week for six months. My GP prescribed me that after discovering that my Vitamin D levels weren’t just low, they were non-existent!
My spinal MRI was in early December, and I was told I’d get results in about two weeks. Great! I’d get my answers before Christmas!
Christmas came and went – I had no letters calling me in to give me answers but on the plus side, I also didn’t have a letter calling me in for that lumbar puncture.
Then it was the new year. And I was sick of waiting around.