Sunday, 2 March 2008

Round up

I’ve been meaning to do this since the beginning of January, write a post which summarises the last year for me. A year that has been so hard yet also so wonderfully good!

It all started in January 2007, the 6th to be precise, when I met B for the first time in person for lunch in a pub. I talked the whole time and I think he only spoke to ask me what I wanted to drink!

So things went from there, we met for dinner and then again for lunch and we carried on. At the end of January I got a strange feeling in my right hand, my little finger and finger next to it were feeling slightly numb. I put this down to having driven a strange vehicle the weekend before. After that the numbness moved to my feet and lower legs and gradually moved on up. To begin with it wasn’t bad. I could feel almost normally, then one morning after a hard couple of shifts I woke up with much less feeling all the way from my feet to my bum and poor balance.

I thought back to two periods of numbness to the left side of my torso which included an episode of a very strange sensation down my spine. I had decided that week that I was not safe doing my job as an ambulance technician and therefore made a Drs appointment. I was thinking referral to an osteopath/chiropractor for my back but no referral to a neurologist.

The wait for an appointment on the NHS was too long so my very kind parents paid for me to get one privately. Around a month later I was sat in a very nice room at the Capio hospital in Reading with a nice lade Neurologist. She did lots and lots of little tests and said that the problem I had developed with my right eye was also related to what was going on. She said that they had to bear in mind Multiple Sclerosis and cancer but that it may be an isolated incident of inflammation and was going to send me for an MRI. To be honest I went away from that appointment unconvinced and still assuming they would find a problem with my back.

I had a quick look at the MS Society website but decided to leave the research until someone told me what my problem actually was.

In the intervening time I had a few different symptoms including optic neuritis and the involvement of my left arm. I then had my MRI on the 16th May 2007. My neuro had kindly rung before hand to let me know that she was in x-ray the next evening so would look up my results and give me a ring. She did and said that there was inflammation on my scan and that she would like to see me on the Monday (21st) around 10am but that her schedule was full so couldn’t say exactly when I would be seen.

So at 10am on Monday the 21st May 2007 I was seen and told that I have MS. I held it together for the majority of the appointment but Mum was there (as she was at all my appointments) so took some of it in as well. Mum had to ring B and tell him because every time I thought about telling him I burst into tears! I went to work for a few hours the next couple of days but in the end I decided that I felt terrible (probably because of the steroids) and I would take the last two days off.

I had an appointment with the MS specialist and had VEP/SEP tests done. I also saw my MS Nurse very quickly and was on DMDs by the middle of August. Looks like West Berkshire does a reasonable job!

Throughout all of this B was there for me. I gave him the opportunity to get out of the relationship on the day I was diagnosed but he said no. He had told me he loved me the month or so before; I had said it back some time after. Having never said I love you to a boyfriend before it was a bit of a scary and unknown quantity! His view was that you never know what is ahead and lets just get on with things!

Since then things got better, I went back to work at the end of July and apart from a bit of tingling in my feet and legs when they got too hot I was back to normal. Unfortunately a month later I started relapsing again. It involved my torso and left eye initially. I had a week off when the optic neuritis was at its worst but other than that I just about managed to work. On the 17th December the relapse took hold of my legs properly and I had a mini-melt down at work before having to go onto light duties again. Over the next couple of days my hands started to go numb and I started getting slight pains in my right hand during the night and when typing. Nothing horrendous.

I am still off the road, although a lot better. I have worked full time throughout and have managed to have a life outside of work, which I haven’t really had since going back on the road.

B and I got engaged on the 5th January 2008 and we are in the process of moving house. He doesn’t seem at all phased by any of what has happened over the last year or so and says he loves me more and more.

So as I said at the beginning of this post, it’s been a horrible year it really has but I wouldn’t go back. I’ll take B and the MS rather than not having either. May sound strange but that’s how I feel!

That's a terrible summary but it would go on forever.......


Anne said...

Hi Victoria, I find so much of me in you that it is scary!

Three months after I met my hubby, we lived together for a year before marriage. We knew there was something wrong with me but we didn't have a name for it.

In the 1970's, there were no MRI's and no definitive tests for MS. Diagnosis was made by observing symptoms, how many incidents documented and finally in 1976 with a CT Scan (which were brand new to the US).

I gave him the chance to back out of the wedding, emphasizing that I was "sick" and didn't know how it was going to pan out. Walking was a big problem, as was numbness on left side. He said he was in this relationship for the long haul - in sickness and in health. I reminded him many times since then that it would be more sickness then health!

We got married on Sept 18, 1976 and by Columbus Day (Oct 12, 1976), a diagnosis was finally made of MS. There was no cure for it; no approved treatment - just steroids. Plasmaphoresis was experimental and I endured that for two years and when it was clear that it wasn't helping, I stopped treatments. We were told to not have children as it would make the MS flare. Actually, quite the opposite is true - MS usually goes dormant during pregnancy and as long as the stressors are not too bad after delivery, MS rarely flares after birth of baby.

Through it all, my hubby has stood with me. We celebrated our 32nd anniversary in 2007 and we are still very very happy. We have two sons, ages 26 and 24. Our oldest is autistic, but high functioning. Many MS docs have told me there is not relationship between MS and autism - I didn't give it to him. Most likely he got it from innoculations as a baby and toddler. We didn't do the same innoculations with the 2nd son. So there might be some truth to it - I don't know.

Nowadays, there is much more info out there about MS and I think your fiance' is making a very informed decision in sticking by you. He loves you and that love will carry you both through the relapses and the well times.

I am so happy for you that you have found a mate who, knowing about the MS going in to marriage, will in all likelihood be your best friend for life. Much good luck to you both.

Hugs, Anne


Victoria, you've definitely got a keeper there in B. I experienced a severe case of optic neuritis in 2000, years after having vision/headache difficulties which led to my very first MRI in 1993.

But it was one week after going on a blind date in May 2005 that I had a doctor's appointment during which I mentioned tingling and coordination difficulties in my left hand. I'm a musician and that bothered me. Since I had swum pretty hard into a woman at the pool while doing laps, we both thought that it was likely a pinched nerve.

A month later my new sweetie began rubbing my back and that's when I realized that I couldn't feel one side. Back to the doctor, sent for MRIs, referred to neurologist, more MRIs, bloodwork, evoked potentials, spinal tap, 5-day IV steriods - all by mid-August. In Sept, a case of shingles and follow-up MRIs after which official diagnosis in October, and another big relapse over Christmas.

Throughout all of this my sweetie never faultered and has stuck around. We have discussed marriage, buying a home, and children, but haven't made any of it official yet.

I know what it's like to think that someone might just say 'to heck with it' and not want to deal with the MS. But love can be amazing and overcomes many obstacles.

Good luck with the move. You are both very luck people.