What a weekend I have just had. I have been on Tysabri since March 2013 and JC positive for about two years, now. One of the consequences of that is I have more regular MRIs.
On Friday, the 6th, I went for a scan not expecting anything to be any different. It was just the short scan, no contrast involved, but when that was done, and I was out of the machine, I was told the scan had found a bleed on my brain and under the advice of a neurosurgeon I should to be admitted for 48 hours and have regular obs done.
Next thing that happened was that I was taken over to A&E and quick-tracked into have obs done. After a three hour wait I was taken up to a ward and given a bed.
I am single, living on my own, and I found the almost constant noise, although not loud, hard to handle. Four hourly obs made it hard to get any sleep but at the back of my mind was the worry that I might not wake up from any sleep I did get.
Anyway nothing happened. I have to go back in 3 weeks for a CT scan. If not for the MRI I wouldn’t have known there was anything to be concerned about. I felt no different to how I had felt for a long time.
In a week’s time I am due to start Gilenya as my JC risk factor has got a bit much for me and hope things continue to hold as they are now.
Oh blimey David. That sounds scary and bloody horrible to boot.
Tips for dealing with hospital noise: ear plugs for nighttime of course (ask the nurses), but also earphones plugged into your mobile phone during the day. You don’t have to actually play any music, but just the act of having them in helps. Plus, when I was in hospital this summer I discovered they have eye masks available on the ward of the hospital I was in. So ear plugs or earphones plus an eye mask helps to blot out the never ending noise and kerfuffle.
I can’t imagine how frightened you must have been. I suspect the letters PML featured in your brain quite a lot.
Hopefully when you go back all will be well. Let us know what happens. And I do hope your change to Gilenya is smooth and you don’t have any untoward side effects.
Sorry for not replying earlier; I corrected some spelling and as I have made so few posts here it had to wait to be checked by a moderator before it appeared and the post disappeared 'til it was. Yes PML did loom large in my thoughts. I did ask for, and get, some things to help me. The eye masks helped but ear plugs did little to keep the noise out. The snoring in the other beds was, perhaps, the hardest part to handle. I will post any news on developments when I have it. One thing I was grateful for was rearranging where my MRI was to take place. To take pressure of my local hospital, my first appointment was at a hospital that would have needed a train journey with two changes of train or a bus journey of nearly two hours. I never learned to drive and my local hospital is a short, easy to access, bus ride away.