Tuesday, May 09, 2006

Where Have I Been

It seems like 2006 is our year for medical stuff. First Callum's tonsils and adenoids surgery then his funky blood work, then Kieran's MRI and neurosurgeon consult and now it's my turn.

I had some blurry vision earlier this year which the optometrist thought was damage to my cornea. I religiously applied the cream she gave me and went back every couple of week for a recheck, eventually it cleared up and my corrected vision was back to 20/20 with my contact lenses. Two weeks later and I noticed that when I was standing about 6 feet away from the mirror in the ladies bathroom at work my features were very blurry and I really really had to concentrate on the computer screen to make everything out. I thought I must have over worn my new contact lenses and managed to damage my cornea again, so back to the optometrist I go. She's not sure what's going on but keeps asking if I have a history of cornea disease (I don't) and she refers me to an opthamologist, I'm slightly worried at this point - say 2 out of 10.

A couple of days later and I find myself sitting in the very posh waiting room of the opthamologist - I like this office, they even have big bowls of chocolate just sitting there all around the waiting area - this is my kind of doctor. I go through various eye tests with flashing lights, photographs of the nerves and the standard lets read the letters on the eye chart. I don't manage to read any of them with my bad eye - yes the vision is that bad. The doctor has made a few comments about "underlying causes" and has made references to MRI's and neurologists but when he brings Mark in from the waiting room I know this is going to be bad. It turns out that I have something called retrobular neuritis which is inflammation of the optic nerve, then the scary words come - the probable cause is multiple sclerosis. Worry level 10/10. I hold it together till we get out of the office and then burst into tears and just can't stop. This isn't supposed to happen to me, I'm supposed to be the healthy one. I get a cold about once a year and that's it, I can't be sick, I have 2 small kids who I want to be able to run around after, I can't be sick, I don't want to be sick.

I get home and call my mum, it's after 11pm in England but she's still up. I cry and sob again and can hardly get the words out. Less than an hour later she calls back to tell us what time her plane arrives.

I do some reading up online, but not too much because I know that information overload can be just as bad as having no information at all. It's not all doom ad gloom and I realise that if I do have MS then there's not a whole lot that I can do about it and I should just be glad that it was caught early.

MRI is my next step, I'm a little more educated after Kieran had his earlier this year and this time I know it's going to take a while. However I had no idea how noisy they were. The images are taken in bursts of between 2 and 5 minutes and with each sequence the noises change - first an annoying person who keeps on ringing and ringing your door bell, then a bad electric guitar player who plays the same note over and over again. I close my eyes and listen to all these noises and try to pretend that I'm somewhere else - I even fall back on my focus object from my Lamaze classes.

Neurologist appointment is next, no chocolates this time just a boring waiting room. I have to stand on one leg, walk in a straight line and do various other little exercises. Everything seems fine to me apart from my blurry vision. We go over my medical history and suddenly I start wondering about the few weeks after Callum's birth when I continuously walked into things and broke my toe - twice. Maybe that was an episode and I just didn't realise. I start thinking of any little aches and pains or peculiarities and wonder if I was ignoring symptoms. Then some good news, the MRI looks good - a couple of little patches that could possibly be something but it looks pretty good and apart from my eyes I pass the exam with no problems. The neurologist refers me to an MS specialist who should hopefully be able to give me some more answers. I'm also scheduled for a lumbar puncture - having someone stick a needle in my back and collect my spinal fluid doesn't sound like a fun way to spend a Tuesday morning but I suppose it has to be done.

The lumbar puncture actually goes OK, I feel a funny electric sensation when the needle is inserted and when it's removed but it doesn't hurt. Four vials of my spinal fluid are collected and a couple of vials of blood from my arm. It's all being analysed now and hopefully I'll have the results by the end of the week. The worst part was still to come, a "lucky' 10% of people get a spinal headache after a lumbar puncture, I got to be one of the lucky ones. I spent 5 days lying flat on my back because sitting or standing gave me an excruciating headache. The time I did spend with the kids all I could do was lie on the floor and let them jump all over me. Pain medicine did almost nothing and the only relief was lying down. I now have lots and lots of sympathy for people with migraines - I never knew headaches could get that bad.

Today is the first day that I've felt normal again, I've only had 1 lot of pain medicine and have managed to type this whole message without getting a headache. I had a follow up with the opthamologist and can actually read some of the letters on the eye chart now! He says I'm healing nicely and hopefully my vision will be back within the next 2 to 4 weeks. I'm signed off work for the next few days so I'm going to relax and potter about the house, I think I'll be happy enough being a lady of leisure for a little while. Worry level 2/10.


Lori said...

Wow. Oh wow. I don't really know what to say except that I'll be sending up prayers for you. Hopefully, you will get some definitive news soon. I was almost in L.A. this week as my dad is having heart valve surgery at USC Med Center tomorrow. I could have brought you some chocolates & moral support! I'm glad your mom came over. Hope she's still there so you can share a wonderful Mother's Day together. Keep us posted!

Jenny (and Max) said...

Wow! I hope for good news for you. Keep us updated. Prayers sent your way.

Anonymous said...

We have been thinking of you and hoping and praying for your tests to be OK ever since we heard via Jessica. So glad to learn things are now improving, and hoping that time will be a great healer.
With our love to you all

Belovedlife said...

You are in our prayers! Hang in there, it can be tough going, but you'll be fine! Keep hugging and kissing those little ones, they make every thing seem better.
Have a happy Mother's day!

Anonymous said...


I have been thinking about you so much lately since you posted a bit about this on downsyn.

Hugs from Michigan!

Kelley said...

Hi, I read about your optic neuritis. I too had the optic neuritis about 6 years ago and now I think I'm getting it again. I have an appointment to see my neurologist. I had my 2nd MRI last month and it was negative again! I'm really nervous. How are you doing? Kelley in SD