On 31 March, I started this blog with a very open and honest post.
Since then I have received calls, texts and emails from many people, a lot of whom see me week in week out and had no idea about the elephant in the room……that I have Mutiple Sclerosis. So I’ve decided to tell my story of being diagnosed with MS.
There are two versions of this story – the short version and the MUCH longer version. The longer version requires tea or wine……
SHORT VERSION: I have been living with epilepsy since May 2009 and living with MS since I was diagnosed in December 2012. I take medication for both illnesses and get on with my life as best I can. If you want to know the entire story, please read on.
SOMEWHAT LONGER VERSION: It was May 2009 …. what seems like an eternity ago now and it was also the week leading up to the Heineken Cup Final in Edinburgh (you may find that a lot of references will be made to rugby fixtures rather than actual dates – this is how I recollect some things given my love of rugby!).
…….Leinster v Leicester in what was Leinster’s first European Cup Final – let’s just say there was NO CHANCE I was missing this match!
I was sitting at my desk in work that week. It was Wednesday and all of a sudden I got this really weird smell. It is very hard to describe, but it was something like the smell of stagnant water. I asked colleagues around me what the smell was – assuming it was the air-conditioning – and they just looked at me and told me they couldn’t smell anything. The smell came again and again each time lasting for about ten seconds. Something was wrong.
I left work and went straight to my doctor. I was told I had a virus – go home to bed and sleep it off. So, that I did. I got up the next morning. I went to work. I felt fine. I finished out the working week looking forward to my trip to Edinburgh for the match. Leinster won their first Heineken Cup that weekend. It was sensational.
Exactly a week had passed and the smell came back again. This time I was a little more worried. I had been dealing with some stress and I felt that the smell was as a result of this.
Life Lesson No. 1: STRESS IS NO GOOD FOR YOU.
I started to google my symptoms and when you do this you get every worse case scenario known to medical science and I started to stress out even more….
Life Lession No. 2: DO NOT USE GOOGLE TO ATTEMPT TO DIAGNOSE AN ILLNESS.
So, I left work again and went to the doctor but this time I went to a completey different doctor. This doctor seemed somewhat more concerned and told me to take a week off and referred me to see a Neurologist. I visited the Neurologist the next week and he immediately mentioned “epilepsy” and “simple partial seizures”. Words I had heard before but admittedly didn’t really understand.
The Neurologist sent me for an MRI scan of my brain and also a EEG, a test that detects the electrical activity in your brain.
The EEG was done within a couple of weeks and the results came back as abnormal – especially in the temporal lobe areas of my brain. This confirmed the epilepsy diagnosis. I suffer from simple partial seizures which is possibly the best form of epilepsy to have. I just get a weird smell. That’s it. I was put on medication straight away. Two tablets twice a day. DO NOT STOP TAKING THEM. It was scary at first to deal with but I can still drive and my tablets completely control it. Keeping stress to a minimum also helps.
Then the report from the MRI scan came back. It stated that I had white spots on my brain and suggested MS as one of the causes. As I didn’t have any symptoms of MS, my Neurologist was concerned and told me that I needed to have a lumbar puncture done to confirm whether or not the white spots appearing on my brain scan could be linked to MS or not.
I did not like the idea of a lumbar puncture AT ALL but I went ahead with it. If it was the only way of finding out for sure whether these white spots were MS or not, then I wanted to know.
A lumbar puncture tests your cerebrospinal fluid to look for the presence of oligoclonal bands. The test itself wasn’t that bad. You are given a local anaesthetic and you don’t feel much pain. It only took about thirty minutes. Having to lie on your back for four hours afterwards and constantly drink water to ensure you don’t get a headache was the testing part. I won’t go into any further detail.
The results of the lumbar puncture came back a week later. POSITIVE. Oligoclonal bands were present and my Neurologist explained that at some stage in my life I would more than likely get MS.
But that wasn’t the diagnosis.
With MS, something actually has to happen to you before a full diagnosis is made. For example, you need to lose function of one of your limbs or sight in an eye for around twelve or twenty-four hours before they will clinically diagnose you. I was told something could happen to me tomorrow, next week, next month, next year, ten years from now or maybe I would never have any symptoms and I would never be clinically diagnosed.
That was early 2010.
Let me tell you this, it’s not fun waking up every morning wondering and worrying if something will happen to you or not. I fell asleep on my arm on many occasions and woke up with pins and needles, started to panic, diagnosed myself with MS and then realised by the time I was getting into the shower that the pins and needles had gone. So I decided to try my best to stop worrying because I was constantly working myself up over things.
WORRYING ABOUT SOMETHING THAT MIGHT NEVER HAPPEN GETS YOU NOWHERE – that’s Life Lesson No. 3!
I continued to have routine appointments with my Neurologist.
Friday, 7 December 2012. I woke up early and was very excited to be heading off to Clermont-Auvergne for a Leinster Heineken Cup pool match. My left leg was feeling unnaturally warm though. It felt really weird. It wasn’t hot to touch but the sensation I had was that it was burning up on the inside. I was convinced I had a clot so on the way to the airport I called into my local doctor. He said it wasn’t a clot and to go and enjoy my weekend in Clermont and stop worrying….. I had decided to stop worrying but saying and doing are two very different things!!
I flew out that Friday afternoon to Lyon with a group of friends. We rented a car and drove to Clermont. We went out on the Friday night. We had food, we had drinks and we danced. I danced a lot…..that’s what I do. We went back to our hotel and went to bed. The heat in my leg was starting to calm now and I could only thank my dancing for that!
Saturday morning, I woke up. The heat was now completely gone in my left leg but I couldn’t move my right leg. The power was gone from below the knee. I couldn’t move my ankle. I couldn’t wiggle any of my toes. I couldn’t move my foot. I had NO power below my knee. I now know that the medical term for this is Foot Drop.
I called my Mum straight away and told her that this was it. I had MS. We were both upset but seen as how I was in France there was nothing I could do about it. I would stay until Monday – when I was originally due to fly home – and enjoy the match and banter with my friends.
My lack of mobility was noticeable so not wanting to ruin anyone’s weekend or cause any hassle, I told everyone that I had a trapped nerve in my knee and that’s why I was walking unusually. I could barely walk at all. I was dragging my foot behind me everywhere I went. I remember swearing to myself that I was going to lose weight after that. Carrying a dead weight of your lower leg around with you is tough work….. Especially when you are carrying an extra 1 or 12 pounds like me!
Monday, 10 December I flew home and went straight to my Mum’s house. We rang the doctor on call and I went to Navan hospital. The doctor on duty there told me that I really needed to go to the Lourdes Hsopital Drogheda because I needed an MRI and that going Tuesday morning would be better rather than waiting overnight in the A&E. So I took his advice, went home and then returned to Drogheda the next morning. I was triaged by the nurse on arrival and then sent straight in for an MRI of my brain and spine. The MRI had shown up new white spots.
I explained my medical history and that I had already had a lumbar puncture done, etc. The doctor in Drogheda then put a call into my Neurologist and they diagnosed me over the course of that telephone conversation. The doctor in the Loudres was fantastic. He put me on liquid steroids straight away and told me he would do everything he could to get my foot back. Five days later and I walked out of the Loudres hospital.
I was diagnosed with Relapsing Remitting MS which as the name suggests means that something will happen to me, I will have treatment and then hopefully I will recover.
I inject myself once a week with a Beta Interferon injection into my thigh. It’s not nice. I don’t like doing it. I sit on my bed forcing myself to do it some weeks. It hurts, but in the grand scheme of things it’s not that bad. Things could always be worse.
I also take a wide range of vitamins. I take over 2000 international units of Vit D every day. I take fish oils to keep my joints in good shape. I take Vit B complex to release as much energy as possible from my food. I also take an antihistamine every day because if I don’t I get an uncontrollable itch in my right shoulder blade.
I have a brain and spine scan every year. I hate it and panic before going into the machine. I drive the nurses crazy because I always test the panic button and set the alarms off before I let them leave me alone in the room in the machine. I have my bloods tested every three months. I go to see my MS team in Beaumont every six months and I have a mobile phone number for my MS nurse who I can call 24 hours a day.
Generally, I’m good and to look at me no one would ever guess that I have MS.
No two people with MS are the same though. Symptoms differ from person to person.
For me, tiredness is probably the hardest thing to deal with. I work full-time and then I used to teach Zumba classes in my spare time but I had to give this up last year because I was just not able to do it all and it was taking its toll. It broke my heart to give up teaching Zumba. I love to dance and my Zumba classes were full of amazing people. All of whom I miss terribly.
In January of this year, I had my annual MRI scan and then a follow up appointment with my MS team in Beaumont in March. Unfortunately, they told me that I have two new white spots appearing on the scans from January. One on my brain and one at the top of my spine. This would suggest that perhaps my current medication isn’t working. We have agreed to repeat the MRI scan in September and then decide on my course of treatment based on what the scan in September shows up. If there are new white spots then, I will have to change treatment.
I don’t wake up every morning and think ‘I have MS’. I really don’t. But this news really upset me.
I can’t feel the damage that is being done to my brain or my spine so when the doctor tells you you have new white spots and that your medication may not be working, it is difficult….. Especially when you are forcing yourself to stick a needle in your leg every week and now I’m not even sure if it’s helping me! It also puts things into perspective and we all need that every now and again.
Anyway, I’m not going to worry too much about it. What’s meant to be will be.
So, that’s the tale of the elephant in the room. It’s a very long and not so exciting story but it is what it is.
If you have any questions at all on any of this, please comment below or contact me and I promise I will reply to you.
Please also see the MS Ireland website for more details on MS http://www.ms-society.ie/