Me, My MS and I



Journey To Diagnosis

Realised that I’ve not actually written about how I came to be diagnosed with MS. When I was around two and a half, I had glandular fever which saw me hospitalised for a long time and almost killed me. I’ve had periods of good and bad health ever since. But until around the time I turned 20, I wasn’t experiencing MS symptoms (unless I didn’t notice them or ignored them!).

I began suffering from periods of debilitating fatigue and found heat difficult to tolerate; I’d become tired and my muscles would stiffen. I also began to find my muscles stiff in the morning and cramping at night. Trips to the loo became much more frequent; my bladder was ‘playing up’ as I call it. The strangest symptoms by far though were the tingling and numbness in the ring and pinky fingers of both hands (not at the same time) and having areas of my body go numb periodically – part of a leg, my foot, a small portion of my face- and patches of the skin on my legs feeling wet when they weren’t. Shopping was getting worse too – I’d find my arms shaking under the weight of a light bag and tremors staying for hours after I’d put them down. Was not happy about that one at all, being a bit of a shopaholic!!

Christmas a couple of years ago was a complete wash out – I was confined to bed with severe fatigue and pain from my hips down. I could make it to the bathroom and back, but that was it. I assumed I’d been overdoing things or something and didn’t bother my GP. Strange as it sounds,I thought I’d be discounted or told it was a virus and to have a few days in bed (like I’d have a choice!) and there were much more sick people in need of a Dr at that time of year than me. I class this as my first MS ‘attack’ as it fits the signs and my neuro made positive sounds and nodded when I described the ‘episode’. A few weeks later, I was feeling more like my old self, but as my gran remarked to me sometime later, I’ve never really been ‘right’ since – I’ve never felt fully well since, although I’m not terribly ill either. Although my left foot has never felt heat well again since that episode (tested the bath water and burnt my foot more than once because the water was too hot and didn’t feel it). Things progressed somewhat along this line, with a few more mild and short episodes. I also started to suffer from the ‘band’ or ‘hug’ but had absolutely no idea this was caused my MS until I talked to my Aunt’s partner who has MS and he told me what it was a few months ago.

Until October last year, I thought nothing more of the episode. Then I woke up one morning with severe pain in my left eye, reduced vision and poor colour saturation. Having worked in a refractive surgery clinic for a few years previously, I immediately thought: Optic Neuritis. I phoned an old colleague who’s an optometrist and she advised me to see my optometrist asap. The optometrist confirmed my suspicions and referred me to the hospital. By this point, I was fairly positive I had MS (not many other conditions cause Optic Neuritis, and I had none of them). It took a month to finally get to see the Opthalmologist at the hospital for some unknown reason with me being ill all the while, and by that time my ON had begun to reduce in severity. My GP prescribed me anticonvulsants in the meantime as he felt I was suffering from visual migraines (!!!!) and these only made the fatigue 10 times worse – I ended up in bed for a week. The vertigo that came with the ON lasted until a couple of months ago and wasn’t fun! The first Opthalmologist I was seen by asked me repeatedly about knocks to the head and headaches and didn’t listen to my symptoms. The second Opthalmologist was much more thorough and sent me for an MRI. Having listened to my symptoms, I guess she suspected MS. It was a very unusual experience, but I was so relaxed I almost fell asleep and the lovely radiologist gave me lots of rock music to listen to over the deafening noise of the MRI contraption. I could see my boobs in the mirror which lets you see outside the contraption which made me laugh! The results showed lesions on the brain (indicative of MS) and I was referred to the Neurologist.

The Neuro felt my symptoms all added up to MS and was 99% sure and diagnosed MS provisionally, but due to my age and also to rule out other conditions, he sent me for blood tests, evoked potential tests and the dreaded lumbar puncture (I had one when I had Glandular Fever and it was an horrific experience because I was so young and ill). The LP wasn’t exactly a barrel of laughs, but was better this time round. All the results confirmed MS and I was diagnosed RR this year. The evoked potential showed abnormal results for my left eye, and I now have glasses for reading and the laptop (permanent damage done by ON) and the colour saturation is also reduced in that eye, never to improve again. My glasses are pretty damn funky though 🙂

My employers have been great and sent me to an occupational health consultant who advised regular breaks at work, non-repetitive work and a desk fan for when the temperature rises which makes me uncomfortable. I also have the option to work from home a couple of days a week if my attacks get worse or more frequent and can go back to the occupational health consultant any time I feel my situation needs reviewed. My colleagues have been great and really supportive too – I decided to be completely open about my condition as it saved anyone any embarassment when I was asked what I’d done to my leg when I was limping. Saves explaining why I stop mid-sentence with a mind blank or mix up my words too!

Nowadays, my balance is pretty rubbish and I have good days and bad days, but it could be a lot worse 🙂 I get on with life as normally as I can, motorbiking (pillion) and all sorts of other nonsense. I make the most of the good days and work through the not so good. Eating healthily and gluten free and doing Tai Chi for the muscles. Off for my LDN consultation tomorrow. Wish me luck!!

Apologies for the length of the post, but once I started writing, it all just came out in a babble!
Advertisements

Trackbacks & Pingbacks

Comments

  1. * fiona says:

    I have had almost identical systems to you, it’s so funny (not really!) to read your story as it’s so similar to mine, except for the eyes. I hope you’re doing as well as you can be. I’m managing to work 5 days and week and lead a good social life despite 2 big relapses this year. Gluten free lifestyle is the way forward, I am now naming my relapses after their causes – Dec 2010 was soy sauce and August was cous cous. 😉

    Take care, I’ve enjoyed reading your story! xx fiona

    | Reply Posted 5 years, 7 months ago
    • Hi Fiona,

      I’m good, thanks. Hope you’re doing as well as can be, too 🙂 Glad you enjoyed reading my story. Love that you’re naming your relapses after their causes! It’s a great idea. Unfortunately mine just appear with no cause, so I can’t give them a cool name 😉 Really glad to hear you’re managing to work and have fun even with the big relapses. There’s gluten free soy sauce available – which is fab if you’re a big fan or like sushi – and it tastes pretty much the same. I couldn’t live without soy sauce or the gluten free one!!

      Take care,

      Jenna xx

      | Reply Posted 5 years, 7 months ago
      • * fiona says:

        yes i do love tamari (the gluten free one) – i have been off gluten for about 3 years now and it’s fine don’t miss much – only got diagnosed with ms last year but i managed to figure out a lot of things that bothered my body before i even knew what ms was.

        sorry to hear your relapses are so random and unpredictable – i feel really lucky i am able to identify some triggers. the other main one is severe emotional stress.

        have you done much research into the glandular fever and the epstein barr virus? a lot of research in australia has found tangible links – i had it at 15 years too.

        have really enjoyed reading your blog – you’ve given me encouragement – thank you!

        PS – lumbar punctures are the worst experience ever – berrggggh!

        Posted 5 years, 7 months ago


Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

%d bloggers like this: