I've had MS for how long?!

I got through the next few weeks alone in D-Town. How did I do this? Well, I was kept busy at work, I got to the gym most days and on weekends and I was writing snail mail letters plus email to M when I had the chance. I was also kept occupied by keeping in contact with K - no more than usual. Our phone convos and SMS were very regular.

I had my flight booked to Sydney for the day after the school year finished. I couldn't wait to get out of the lonely tropics. But before leaving D-Town mum contacted me about organising an appointment with a Neurologist via her awesome, lovely, kind, empathetic GP, Dr B. Legend. Mum booked me in to see Dr B a few days after my Sydney arrival.

When we saw Dr B he said he had organised an appointment for me to see Dr S, the Neurologist in Sydney. The greatest thing about this was that Dr S was not only a Neurologist but he was a Neurologist who specialised in MS. Nice one.

I felt a bit anxious about seeing Dr S, because he knew so much about MS I was scared I was going to receive more info about my individual MS situation. This is a good thing right? Yeah sure, if the info is positive...but what if it was negative? 'What ifs' are real motherfuckers.

Prior to seeing Dr S, I organised with a bit of pain to have my CD of brain and cervical spine images to be posted to Dr S's office. $30 later, it arrives safely. Phew. I wasn't keen on having to get another MRI done, and I just wanted to focus on enjoying my holiday time and enjoying my Sydney.

So mum and I went to see Dr S. His PA, receptionist or whatever is a funny woman. She is nice but is a bit scary. We sat waiting in the nice waiting area, reading nice magazine, enjoying the nice air conditioning and then we were called upon.

Basically we went through the same kind of procedures as I had done with the GP, ER doc and other D-Town Neuro. A few pokes and prods, describing all the weirdo sensations, trying to match up the times as to when I had them, what parts of my body were affected yadda yadda. Writing, writing, busy writing. Then we got down to checking out the pictures of my brain (still feels yukky to look at!). This was the first time mum had seen them. She was cool and calm. The ones of my spine did not show up, so he could only speak of the brain.

He relayed a lot of info that I had already been told by the other neuro in D-Town. Stuff like, what MS is, a bit about medication and the different types of MS etc.

Dr S said I had a lot of lesions on my brain. I thought that myself, but I didn't really understand how much 'a lot' is. I told him about how some things now make sense to me. For example, I have always felt like I am tired a lot. And as most people do, you think it's work, or poor sleep or something else. You accept those excuses and get on with it. I thought maybe I was just lazy. I had lost a bit of weight since my weight loss plan. But I didn't 'feel' any 'lighter'. I do have poor sleep, often struggling to get to sleep and stay asleep. I get hot. I get hot very easily. This was definitely one symptom of MS that I strongly believe I have been suffering from for quite a while.

I remember once in Cammeray, everyone was outside, enjoying the sun, and the warm summer weather. I was very hot though, and I stayed inside. I would pop out occasionally to socialise,  but I really couldn't stand it. People were asking me what was wrong. I just made up some excuse that I was tired and feeling hot but I wouldn't go into exactly how hot. M asked me too. He was so puzzled as to why I was inside. I think he thought that something was wrong. As if I was cranky or upset. I was just plain hot. I was embarrassed about how hot I was and the sweat that seeped from my forehead and face in general. There had been many times where I felt this way. And now, it made sense. As I have mentioned before, I would often be so puzzled and curious as to why no one else looked as hot as I did.

Anyways, back to Dr S. He said something interesting, which was a bit confronting but it had its positives. He believed that I have had MS for years. 5 to 10. Hey? What? 5 to 10 years?! Shit. And this is positive how??? Well, I had many lesions on my brain, but my more serious MS symptoms had not reared their ugly head until now. Sure the fatigue and heat thing, but nothing that made me really worry enough to go to ER and then have an MRI. So the progression of my MS must be slow. Therefore I was not considered to suffer from Progressive MS types. If you have read up on MS at all, you may have come across these types. They are faster. It is extremely sad and my heart goes out to anyone who has or knows someone with this type of MS. It is so unfair.

Due to Dr S's idea/theory that I have had MS for many years, I was able to get the drugs on the 'compassionate usage schemes' instead of waiting for an official diagnosis after a second MRI 3-6 months later. But the question was posed by Dr S, "Do you want to start to inject yourself every other day?". He said that waiting a few months before starting any medication would not affect the stage of MS that I was at. So mum and I declined the drugs.

We picked up a booklet from Dr S, including an article vitamin D. Sun is good, pity I get so bloody hot! I booked another appointment for April, which would be the next time I'd be in Sydney.

Then we left.