Thursday, July 28, 2011

Why I changed the direction of my blog.

On the 10th of July 2011 I woke up and couldn't see properly out of my left eye.  The vision was really blurry and dark.  Within an hour it came right. The next day it happened again and lasted a bit longer.  On the Monday it lasted all day but the blurry area became narrower as the day progressed. On the Tuesday I made an appointment with my optometrist because it just wasn't right.

The optometrist carried out a battery of tests including peripheral vision testing, colour recognition and the usual acuity tests. Based on the results she told me to front up at the Eye clinic at Greenlane Clinical centre the next day.

The clinic opens at 7:30 but I couldn't make it until 8:30 so faced a bit of a wait. That was fine, I had a book. After about 3/4 hour a nurse called my name and took me off for triage. It then transpired that the Optometrist had written the date on her referral as 8/7/11 so they thought I wasn't particularly compliant. After explaining that 'no, I actually saw her at 4:30 yesterday' things changed.  I was placed in the acute waiting room - a dimly lit area. 

After a short wait I was called by a Reg who repeated most of what the Optometrist had done but did mention that optic neuritis which was what I had can be associated with MS!  Normally this wouldn't be a biggie but my past clinical picture made alarms go off in my head (I'll go over this in my next post). 

A HS came in to apparently take my history as I was headed for the Eye Ward for possible steroids.  Near the end of this history taking another Reg came in to explain a bit more. She skirted around MS but I told her the previous Reg had mentioned it (I'd also googled on my iphone in the interim!). She then explained that Steroids can speed up the healing of my eye - it would also heal without them - and may delay onset of MS in people developing it by 2 years. So did I want to proceed with the steroids - that would be a yes.  The next suggestion was an MRI. I wanted as much information as possible  so agreed it would be a good idea.

So I was admitted to the ward on the Wednesday for IV Steroids - only to discover it was 3 days worth! Oh well a change is as good as a holiday so I settled in.  The steroids were foul. I had nausea, a metallic taste in my mouth, insomnia and general malaise.

On the Friday my MRI was booked. This was one of the most horrible experiences in my life. It was not the small space that caused me distress, it was the being totally immobilised and bound across my chest so tight it caused paroxymal coughing which naturally made imaging difficult. I had to keep my eyes closed but my eyes tend to dart about even when closed so again I was not popular. The whole torture took 3/4 hour and if I never have another one it will be too soon.

I returned to the ward for my final dose of steroids and my discharge. I was given an appointment 13 days later to come back.  When I said it seemed along time to wait to find out if I had MS, the nurse said there was no mention of it in my notes - you'd have thought that would have raised a flag but no. I was sent home on 16 days of Prednisone - 60mg for 14 days and 10 mgs for 2 days. 

The oral steroids were only slightly better than the iv. I've been not particularly hungry (a plus), grumpy, barely sleeping, swollen and foggy. It does seem to have helped with muscular pain but my eye stills feels like there is a smear on my glasses - but I'm not wearing any.

So today, 13 days later I returned to the Eye clinic. The wait wasn't too bad as I had an appointment. I was seen by another Reg and took this as perhaps a good sign because surely if there was anything bad on the MRI the boss would be seeing me. She did all the tests and then said she was going to discuss it with the Consultant. There was a long wait and then the consultant came in.

She explained that things seemed to be improving - I see dark orange rather than light orange for red out of my right eye now. My vision had supposedly improved but that is probably only due to the fact I had my contacts in rather than my not-good glasses.

"So, do you have any questions?"
"Ah, yes! What did the MRI show?"
"Well, it showed inflamation of the optic nerve and there were a few plaques.  It means you are likely to present again with optic neuritis"
"By plaques do you mean lesions?"
"Yes but you haven't got any of the other signs of MS"
"You mean like weakness and foot drop and episodes of slurred speech?"
"Ah yes! Do you have those?"
"Yes, I had slurred speech years ago and I had weakness and foot drop prior to the neuritis" (this had all been told to previous Regs and HS)
"Oh! Well we had better refer you to a neurologist. But we won't need to see you again"
And that was it! Out into the cold with no idea when I'd have an appointment or what to do if I was concerned!

The documentation must be terrible! I can see how people slip through the cracks. I could have presumed the MRI showed nothing and gone my merry way.

So I am now blogging to document my journey - be it to the world of MS or status quo.

1 comment:

Andrew said...

I've only just got around to reading this, and all I can say is "hell"!!

Kind of highlights how much social media like facebook gives the illusion that people's lives are generally ok, and may even be exciting.

Best of luck for the journey, and even better luck for the outcome.