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.

My 2nd relapse in 12 months: Optic Neuritis

This post is coming earlier to you than it should. This is not cool.

Just over a week ago I began to suffer from a pulling pain at the back of my left eye when I would cast my gaze far left, right, up and down. I thought that maybe I was just tired.

But then, Wednesday last week I noticed an area in my peripheral vision that was blurry. This was annoying. The next day it became more noticeable. And the few days after, it became more spread across my vision. Now, it is Monday and the top half of my left eye vision is blurry with a tinge of grey/brown. I also was looking deep into my own eyes at the mirror before bed last night, and I thought i was being paranoid, but it looked like my left pupil was slightly larger than my right. M confirmed that it was not my paranoia taking over. 

I drove into work, unsure if I should be driving. Don't worry, I drove very carefully like the cautious koala I am. I just really needed to turn my whole body to check my left side blind spots. I got to work and spoke to my colleague about this continuing eye problem.

Let me rewind for a second. You are probably wondering where my comments are on my own attempts at a diagnosis. No, I have not changed. I googled the fuck out of this! I was already very aware that having MS meant I was at a high risk of experiencing Optic Neuritis. In a lot of cases, Optic Neuritis is the first symptom experienced that leads to a diagnosis of Multiple Sclerosis. 

I had previously asked an optometrist a few years ago what having Optic Neuritis (ON) is like - so I would be 'prepared' and not completely freak out. He did explain that it typically comes on slowly, and then mentioned the possible symptoms of blurry vision, double vision etc. Remembering this, and reading a lot about others and their experiences with ON, I continued to...google the fuck out of it, naturally. Some might say this is not a good thing, and that google is the devil. But I believed it really helped me in not panicking. I mean really, I could have freaked and taken myself to emergency claiming that I was going blind. But alas, I did not. Instead, I was fairly calm and only slightly feeling scared. 

Anyways, let me get back to it.

I drove home from work after being there for 30 minutes and booking in to see a doctor at the practice I go to.

I saw her. We had a chat. She called my neuro, who then asked me if I could come in today. What a legend - though I never bothered him all that time I was in D-Town. We confirmed a time.

I caught the bus into the city and saw my neuro. I informed him of my only other symptom since I last saw him, which is the altered sensations and tight knee, both of my left leg - I have been experiencing this for almost a year now.

He suggested a course of IV steroids. I declined. Taking steroids will speed up the ON, but that is all. I would rather keep the IV steroids option open when and if I have a severe relapse. Steroids also have their own side effects, and I am not referring to looking like some blow up faux muscle woman. 

He did some tapping reflex stuff, and some eye thingies. He confirmed that I had ON which is basically an inflamed optic nerve. He then proceeded to tell me that Rebif is no longer working for me. 

Shit. Fuck. Poo. 

I had a slight little panic, thinking that I would have to change to another injection med. Rebif was so easy with the use of the Rebismart machine. I was not happy about the thought of having to proper pinch skin and stab that needle in and push medication through a syringe.

Calm down Sascha! Breathe.

He suggested Gilenya or Tysabri.

I won't go into these now, but this is what I will tell you;

Gilenya: One tablet a day. Not been around long. Can cause a slow heart rate. A few deaths in the first year of it being on the market (this has now 'settled')

Tysabri: An infusion once a month, given at a medical clinic/hospital. Reports of a rare brain infection called PML (progressive multifocal leucoencephalopathy) occurring for patients being given Tysabri

I have some patient info packs to look through to help make a decision. I don't really enjoy making such decisions. Despite my amazing google researching skills, I am no doctor!

I am a little bit frightened. I am angry at Rebif for stopping its job. This time last year, after being on Rebif for a year, I had no new lesions. 

My MRI is Wednesday - the results will be different. This will make me sad.

To be honest, I am feeling a bit fragile right now. 2 relapses in one year. Not good. I got used to the left leg being how it has been, but now this eye business? I feel like I am getting those 'OMG I have MS!' feelings back from when I was first diagnosed. It is an unwanted reality check.

That is all.