The profile of the month is chosen by the MSIF editor. The May 2003 Profile is Sean.

Sean

Relapsing-Remitting Multiple Sclerosis (MS) is the form of the disease that is characterised by periodic exacerbations or attacks, which are followed by complete or partial recovery of function. It is the Relapsing-Remitting form of MS that I have.

My first symptoms of what turned out to be Relapsing-Remitting Multiple Sclerosis appeared in the early evening of Saturday 9th November 1996. I was sitting down to eat and had already begun my meal. Half way through the meal I dropped my fork and, for what seemed like an eternity, could not pick it up. I could see the fork on the table and I wanted to pick it up, but the message was not getting through.

My ability to lift the fork returned as quickly as it had disappeared. It was at this time, however, that I also experienced difficulty moving my left arm and left leg. My speech was also slurring intermittently, which used to drive me crazy. I wanted to speak – I had things to say – but the message(s) were simply not getting through. I was, I must admit, becoming slightly frustrated.

Initially, I was frightened by these strange changes that were happening to me, but I wasn't immediately concerned. However, the time period between attacks began to increase and I then became alarmed. I contacted my local doctor, who was not sure what the matter was, but that something serious was wrong. Following an examination, my local doctor referred me to my nearest General Hospital in Cavan.

While I was in Cavan General Hospital, a number of tests were undertaken, under the guidance of a doctor who I cannot praise enough for his the kindness that he showed towards me. These tests carried out on me included a CAT scan (of my head), various blood tests and two Lumber Punctures. The latter procedures frightened the life out of me and were not particularly memorable or indeed pleasant experiences. It turned out that the fluid levels in my spine were not correct.

While I was in hospital in Cavan, I was more or less given a diagnosis of MS, but a full diagnosis had to be given by a neurologist. I could not believe that there was a possibility that I had MS – I had always enjoyed excellent health prior to this.

The various test results were then sent to a neurologist at Beaumont Hospital in Dublin, where I later underwent a Magnetic Resonance Imaging (MRI) scan of my head. The MRI scan showed that there were (at the time) six lesions/plaques in my brain, proving conclusively that I had MS.

I then went to see the neurologist at Beaumont Hospital, where he confirmed the diagnosis as being 100% multiple sclerosis and that I was suffering from the Relapsing-Remitting form of the disease. He then asked me how I felt about starting a new treatment for Relapsing-Remitting MS called Avonex. I replied positively to this question, not realising the method of administration of this newfound drug treatment. Needles and I are not the greatest of friends, and when I discovered that the injection would be given intramuscularly, I felt physically sick.

I felt rather relieved however that I now knew what was wrong with me and the opportunity to receive Avonex could not be passed up – it would have been selfish and irresponsible of me to do so.

Avonex is the name given to a special form of Interferon Beta-1a, which is given (on a weekly basis) as an intra-muscular (IM) injection. Apparently, interferons are proteins produced naturally by the human body and help the body to fight viral infections and help regulate the immune system. Avonex produces its effects in multiple sclerosis by regulating the body's immune response, against myelin, the insulation that surrounds nerve fibres.

I received my first intra-muscular (IM) injection of Avonex at 10.50am on the morning of Tuesday 21st October 1997, at Beaumont Hospital in Dublin. This first injection was given in my left thigh (one of six areas of the body that you can use) and I must admit that I didn’t notice it at all. I had been given notification of the date of my first injection some ten days previously, so I was pretty apprehensive about it to say the least!

I felt fine for the first few hours after this initial injection, but its affects began to ‘kick in’ around 5.00pm that evening. I had aches and pains in the backs of both my legs and they continued for most of Tuesday evening. On Wednesday (22nd October 1997) I had flu-like symptoms, including a massive headache and a high temperature, along with severe aches near the injection site.

I later learned that was I was the first person in Ireland to be prescribed Avonex. I'm famous, or is that infamous – I’m not quite sure! It took quite a long time for me to come to terms with my diagnosis of MS and my need to have a weekly injection of Avonex. Initially, I was very depressed and wondered why it had to happen to me. I think that I’ve come to terms with it now – but it took a long time for me to get to the point in my life where I am now.

Following my first intra-muscular (IM) injection of Avonex, my initial symptoms included flu-like symptoms, shakes and a general feeling of being rather unwell. Initially, I tended to suffer these flu-like symptoms from the evening of the injection (Tuesday) to the following Saturday.

Nowadays, I tend to feel tired and "achy" on Wednesdays. I suppose my body has got used to Avonex at this stage. When I used to think about Avonex, I thought instantly of a needle. Someone once asked me about how I was coping with my medication. I had to ask them what they meant. I had always thought of needles when it came to Avonex, but now I realise that it is medication – I just never thought of it like that before.

My injection day – sorry, my medication day - is Tuesday, and when it is administered, I can then forget about it for another week and just get on with things. I do think about it sometimes and it does depress me. I sometimes get very depressed on occasions and try my utmost to shake myself out of it, but sometimes it can envelope you like a cloud. I’m not sure whether I’m depressed about having to use Avonex, the fact that I have MS in the first place, or if the depression is one of the symptoms of this weird condition – perhaps it’s a combination of all three.

I’m lucky – make that, very lucky – that my diagnosis of MS was undertaken when it was. I may have become much worst if there had been a sort of delay in finding out what was wrong with me. I’m certainly very fortunate that Avonex was available when I was diagnosed and that it appears to be ‘agreeing’ with me. Apart from a rather ‘dodgy’ day each Wednesday, when I feel generally ‘under the weather’, I’m pretty good. I do suffer occasional pain in back and shoulders. There are times when I feel very ‘rough’ and it’s at times like that, that I take things easy – or, at least, I try to!

My wife Lisa is very supportive and she actually gives me my injection every week. I don't know where I would be without her. I can actually learn how to self-inject (I have a video, which shows you, in graphic detail, how to do it), but I can honestly say that I'm not that brave! I’ll leave that task to someone who knows what he or she is doing!

I do get over-tired sometimes. It is the tiredness that can be a real killer! I become tired sometimes when I haven't been doing anything particularly strenuous, and at times when I haven’t been doing anything at all! This can sometimes be very frustrating, particularly when people do not understand the unique ‘tiredness’ that comes with MS. I work part-time for a computer resale company and I have a very understanding employer – Cheers, Pat!

In closing, I feel that my health and my general well-being are substantially better from having been given the opportunity to receive Avonex. If you are on Avonex, know of someone that is, or are about to start this treatment yourself, I hope that you find some sort of hope and encouragement after having read my ‘MS Profile’.

I also hope that you’ll have an opportunity to access my personal web site. I taught myself how to use Microsoft FrontPage 2002 and the fruits of my labours can be found at www.brady558.com where I hope you’ll take a browse through the pages dedicated to multiple sclerosis. You can also send me an email, make a Guest-book submission or get involved in the Forum.

I would like to thank my doctors at Cavan General Hospital and Beaumont Hospital, Dublin, Kevin Curran at the MS North East Office (Carrickmacross, Co. Monaghan) and the North Eastern Health Board. I would also like to express my appreciation to everyone involved in the Co. Meath Branch of the MS Society of Ireland, without whom, in the early days of my diagnosis, I would have been lost.