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.
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