Carol has gone from being fit and able to being in a wheelchair in 8 years. Her life has become dependant on others helping her.
It all started by not walking straight. Carol's right leg was not as strong as her left and this little thing drove me mad. Walking together became difficult because I would be forced off the footpath by the angle. A little thing. Carol had no pain or tingles. Just her right leg was not as strong.
We saw the GP and test results showed that Carol was low on vitamin D. Next thing Carol had the prove she wasn't depressed to a psychologist. We saw the GP again and explained Carol's family history of MS. Carol's mum had MS and one of Carol's sisters has MS. Reluctantly the GP referred us to a Neurologolist. The Neuro said, right let's get a MRI and find out what's going on, so we did.
The MRI showed lesions on Carol's brain and spine and confirmed a diagnoses of MS. We remember the relief of finally having a diagnoses. It took over a year. It wasn't a surprise to us, we knew something was wrong and we now knew what is was. MS is different for everyone, but somethings are very similar. We had watched Carol's mum, Annie, battle MS. We knew it's relentlessness.
The Neuro suggested a 3 day course of steroids, to begin after a bone density scan. They wanted to see how Carol's bones looked before they start being slowly eaten by the steroids. Pumped up on "roids" Carol had a bounce in her step and hungry. Sleeping tablets were needed to switch off at night. The affects wear off over weeks and leave you were you began.
Next the Neuro wanted to 100% confirm Carol's MS, with the only test that can do that, a Lumber Puncture. A MRI is only an indication. Nervously Carol went into St Vincent's Hospital, Melbourne, and had some fluid taken from her spine. It all went ok until she got home. Carol had a rest and then couldn't stand up again because of dizziness and a headache. I rang the hospital and was told, "that's normal, give it a few days". Three days later Carol was able to get up out of bed easily again. They could of warned us and it might not of been so scary. We saw the Neuro again and again confirmed Carol has MS. Carol swore she would never have a lumber puncture again.
The MRI shows a snapshot of the MS lesions. Comparing MRI's gives an idea of their growth. Carol hated the idea of an MRI and requested valium to calm her in the machine. After years of routine MRI's now Carol thinks very little of having one. Now days they are simply a very expensive picture of your brain and spine.
"We are moving to Queensland" Carol told me. MS is a vitamin D deficiency and Melbourne's winters are too cold. Carol needed sun and our daughters needed to grow up in the sun. "Grow some balls and do it" Carol told me. My 40th birthday party became our farewell party. Sadly saying goodbye to our family and friends to dream of living in the sunshine.
Now Carol needed a Neuro in Brisbane and the one we were referred to was the head of MS at the main hospital. We took an instant dislike of each other as he prescribed more "roids". We began searching for another other Neuro after the three days of "roids". We found one locally. She was lovely suggested trying self injections daily of beta interferon. Carol freaked at the idea, but it was a chance to stop her MS from marching forward. We learnt how to use the auto self injector and started the daily routine. Bang into a thigh, bang into the bum. A new spot everyday. We found Carol was getting worse mostly from the trauma of the injections to a muscle. The bad leg got weaker if it was injected in to. Her good leg got weaker if it was used. We stopped it after a couple of months. It was making her quality of life worse for no benefit.
Back to the Neuro and the drawing board. More "roids" while we think about a new drugs called tysabri. We read up about it's potential side effects including PML, a brain infection. Carol decided it was worth the minimal risks and wanted to start on tysabri. We get back to the Neuro only to be told she is leaving Brisbane and we need to find a new Neuro. What ! Not again.
The first one we meet with has no MS patients currently and is very interested in hearing Carol's story. Through tears of sadness Carol tells her MS journey, only to be told that the Neuro doesn't handle MS patients and we should try another Neuro. She charged us full initial consultation rate and I still haven't forgiven her.
Next is a Professor of Neurology and very keen to start Carol on tysabri. A day patient infusion at St Andrews Hospital, Brisbane, begins and continues every 4 weeks. Private health insurance pays the admission to hospital and the Aust. govt.'s PBS pays for the tysabri, at $2000 a hit. We were all settled again finally. See the Neuro every 6 months, tysabri every 4 weeks and tested for PML once a year.
Ouch, as Carol rubs her left cheek, that hurt. Again, it's like an electric nerve pain. Only lasts a few seconds but brings tears. A couple of times each hour for a few hours. We don't know what it is, only that it hurts. Carol visits a dentist and no problem there. It has gone away. We'll tell the Neuro about it next time we see her. A few week later, Ouch, Ouch, and more tears. We are scared but know that it goes away. Days later it reached the point of calling an ambulance. Carol hadn't eaten much and was in real pain. Painkiller after painkiller, morphine worked and we had calm again. Oh, Carol has MS, where would we like her transferred to? Off to St Andrew's where Carol's Neuro is based. Pill after pill the pain went away and after 8 days Carol was discharged with a bag of pill bottles. I brought her home and then read what each one was and how often to give them to Carol. A couple of days later Carol was dropping things and no longer about to see to be able to read. She could no longer stand, let alone walk. Very scary for all of us. I rang the hospital and they said ring the Neuro. It was the weekend and no answer. I decided to stop all pills and see where we were at. Carol didn't take any pills before all of this. Carol was like rubber at this stage. Slowly all the problems disappeared and we got back to normal. Carol now has a wheel chair as a result. This gave Carol freedom to go out and explore with the family. The pain was diagnosed trimenial neuralgia. It has not returned but is still feared.
At the end of 2013, Carol was no longer able to walk to the car or drive, The kids had to start walking to school. I work early in the morning and leave before the sun is up. Jess and Sophie have been walking to school ever since. I pick them up after school. I now wheel chair Carol to and from the car. Around the house we use an office chair. It's just the way it is.
The phone rings after we are all in bed, and it's my Mum. She had watched 60 Minutes and seen that there is an answer to MS. She asks me to watch it online tomorrow and offers support to help find treatment for Carol. This begins lots of research.