MRI, Meds and Monitoring

Hello!

A few things have happened since my last post. Mostly good stuff (phew!).

Firstly, you will be pleased to hear that my Optic Neuritis (ON) is slowly, but surely, disappearing and I think my eyesight is close to being back to normal again (maybe 75% normal?). It did, however, become worse since the last post. It was a few days later when it was at its worst. VERY annoying. All I wanted to do was close my eye until it was back to seeing normally. But I soldiered on, and sometimes it made me very sad and I got those 'what if' thoughts thinking about if it would ever go back to normal...or perhaps it would take a full year to recover (and some cases can take that long!). It was a real reminder that I am a bit broken on the inside. I do have my funny left leg thing going on, but this ON episode would be hard to get used to or ignore. I am also quite proud that I opted not to have the IV steroids. I'll save that lifeline for another time.

I had my MRI. No dye required. No dye - yay! BUT I was drinking sooooo much water leading up to the appointment, so I was constantly needing to wee. My veins are hard to find. The ones you see on the surface are too shallow or whatever, but being hydrated helps to find them and stab things into them. Needing to wee so often became somewhat troublesome when I looked for a toilet at Kings Cross station, and then I was told, 'Nup no toilets here'. I blame the junkies. I had to go into Oporto, as other establishments in the area were too dirty for my liking! I went to the bathroom and felt bad that I was using them...so I bought a bottle of water. But it turns out they weren't injecting the dye stuff at all!

Unfortunately, and not surprisingly, I have new lesions on my brain. This was pretty much expected. Why? Because generally a new symptom (i.e. my optic neuritis) will correlate with a new lesion, or vice versa. That's my understanding anyway, and it makes sense of course. Any new symptom may disappear, or improve. This is good. However...again, my understanding is that the lesion is the scar, right? So scars generally do not completely disappear (but at times, can). These lesions can flare up again and possibly get worse. They can also become aggravated with heat and/or exercise. So that's why people with MS have a heat intolerance...and it temporarily brings back symptoms during the time in the heat, or while being active. For me, when I walk a lot (maybe anything from 100-150m onwards), the tingling and altered sensation in my right leg returns (these feelings are what initially led to my diagnosis). Further to this, my 'funny' left leg will generally feel that little bit worse at the same time! So...the bummer is, I potential could experience another episode of ON - but from reading about others' experiences, most people don't have more than a few times.

There is some positive news that came from the MRI results...and that is that the lesions on my spine have improved and there is no new activity. Hearing this instantly had me at ease. The worry and stress and over thinking I had been suffering from (and there were some days where I really felt quite depressed about my life's current outlook) were finally floating far away.

It is very nerve racking going to see the neuro for the MRI results. It's always the first thing he does which is good because it's always what I want to know first before attacking anything else on the agenda. Let's move on...

It was time now to decide on which new med I will change to. I knew whatever those MRI results showed would dictate which med the neuro would recommend. If he recommended Tysabri, I knew I was not travelling well along my MS path.

The whole week and a bit prior, I had read up on both Gilenya and Tysabri. I spoke to friends and family about the two. After firstly leaning towards Tysabri, I began to reconsider Gilenya. I was constantly looking up people's personal experiences. Most of the time it was good...sometimes it was bad (but not terrible). The PML thing related to Tysabri was just too risky for my liking. Plus, it had been taken off the market previously. Its appeal was that it was a stronger, and I guess you need to expect higher risks with something strong...much like alcohol. Drinking a 250ml spritzer holds less risk of behaving like a dick than drinking a 700ml bottle of Belgian beer at 7.5%. Though you might have a better time having drunk the beer. Whoa..tangent much?!

A dark, heavy, stormy, lightning-filled cloud lifted from my thoughts when the neuro said he recommend I start on Gilenya. Fist pump x 3. The reason being is that my MS is not really considered aggressive enough to go onto Tysabri - and then he mentioned that PML risk.

I still had a few questions...and he answered them accordingly and I liked his answers too. Lucky. I mentioned my anxiety. Particularly with something like Gilenya where the first month, your heart rate slows. That's a whole month of being paranoid! Fuck that. So I made a suggestion that I got from a colleague...should I wear a heart monitor for the first month to help my anxieties? The neuro said something like, "What...so we can monitor your death?". I laughed, he laughed and M laughed. I was being pretty silly apparently. One thing that came up in a lot of my reading was that Gilenya was actually very well tolerated. I was being put at ease by hearing the neuro confirm all the positives, without me having to mention them first...and NO MORE INJECTIONS!!!

The next step was that I needed an ECG. Luckily they were not busy...and I had it straight away. The results will be sent to Dr S (the neuro) on Monday. I need to call to confirm that he has seen them and that I am then right to go in for my first dose on Tuesday!

Gilenya is an oral pill taken daily. It's bright yellow. It's a capsule. Due to it slowing down your heart rate, you must be closely monitored for the first 6 hours upon taking your first pill. Shit man...6 hours. This drug is serious business. This is why I don't like just popping panadol whenever, drinking to excess, choosing IV steroids for convenience over a few weeks of suffering. I have to reserve my body for the serious shit that I actually NEED. I haven't quite gone all natural therapy on you yet, but I really do not like popping over the counter (or bar) stuff.

My heart rate and blood pressure will be monitored every 15 minutes for the first hour, then every 30 minutes until the 6 hours is up - at least that's what I have read. Last thing will be another ECG. When I booked in to the hospital, the nurse asked me if I was told what to expect. I said I kinda knew and she confirmed that I need to do 'nothing'. I will be doing nothing, and I should bring some things to do. Yeah, stuff to do so I don't get anxious, panic or completely freak out!

Besides your heart rate dropping...there are other non-serious side effects like flu symptoms (Oh I know these well!), sinusitis, itching, depression, hair loss (fuck.) and a bunch of others...but these tend to ease after the first month...or so they say. 'They' (another pharmaceutical company) said Rebif flu symptoms would ease after a few months. Ha! Not for me they bloody didn't!

It's been a long entry. Thanks for sticking around. I am feeling a bit more in control of my MS (as much as I can be), but it's still been quite an emotionally exhausting few weeks since the ON came on (plus a few other things in life have been going on). I am broken, and people say "but you're looking good". I read a lot of other people with MS get annoyed by this comment. I think it's starting to annoy me too. But then it's not, because I know those who say it are trying to mean well and be positive, but some people's medical, physical and/or mental issues are invisible but this doesn't mean they shouldn't be acknowledged. How would someone on a bus react if I were to ever ask if I could have their seat because my funny knee is being super funny and I need to rest it? Would I be expected to explain that I have MS? Would I then need to explain what MS is? Would they give up their seat and think I am a pathetic lazy liar?

I'm making chicken schnitzel for dinner.