Liz's Story

Hi, my name is Liz. I'm 33 years old, I have had MS (officially diagnosed), for 3.5years. I was diagnosed on June 22nd, 2007. I'm married, have been for 8 years, and have 3 wonderful children (all boys, but that's another story). They are 8, 7 and nearly 4 years old.
I don't know how much you know about MS, but it's fairly common to experience little symptoms of the disease, for many years before official diagnosis. However, for me, as much as I try to think of things that might have been a sign of MS before my initial attack, I can't. I don't think I had any signs or symptoms beforehand.
Going back to 2006, both hubby and I were overjoyed at the fact we were going to have another baby. Things were good. The first few months of my pregnancy were the normal, ikky, vomity few months. I guess, thinking about it, dealing with being pregnant and having 2 small children already was pretty tough. On top of the already present stress, my brothers marriage broke up, and my nephew was only 18mths old. For some reason; I guess it's because I am like I am, I found this period of time incredibly stressful and terribly depressing. Watching my completely devastated brother, and completely devastated parents, completely devastated me. It was an awful time for me and no doubt an awful time for hubby too. I was pregnant, but I never, or at least very rarely focused on that, or even thought about it.
When I was about 5mths pregnant, my eyes became blurry. As I was pregnant, blurry vision isn't uncommon, so I wasn't particularly concerned about it, it was annoying more than anything. But to be on the safe side, my OB sent me to an eye specialist, who thoroughly checked out everything, with everything coming back completely normal. I do remember him saying "I don't think it's MS or anything like that", and I remember being completely horrified, as I was pregnant, and had a bit of blurry vision, that was all, I certainly didn't have anything like that. So anyway, the blurriness went away, things were ok. Around 6weeks later, my left eye started to become itchy. It started like a sty. But as much as I kept looking, nothing appeared, my eye looked completely normal. The itchiness got worse, it kept waking me up at night, it was so irritating. I resorted to putting SM33 in my eye in the middle of the night (it's a local anaesthetic and is supposed to be used for mouth ulcers). Then aside from my eye, the tips of my fingers on my left hand became numb. The numbness and tingliness, over the next few days/weeks, crept up my arm, armpit and the left side of my shoulder, neck and face. At this point, I knew something was wrong, whether or not it related to being pregnant, I didn't know, but I knew it wasn't right. So, as you do, I rocked up at my OB's office, with 2 children in tow, in tears, almost hyperventilating in the hallway. My blood pressure was fine, baby was fine, and my OB knew that it was possibly neurological, so he got me an appointment with a neurologist. Now this neuro, as i've heard from various health professionals (i'm a registered nurse myself), is a very good neurologist, but doesn't have a very good bed-side manner, and I will be the first to say that 'NO, the man had NO BED-SIDE MANNER". So anyway, I went to see him, told him everything that had been going on and he sent me for an MRI. Now they don't routinely do MRI's on pregnant women, but if they think it's necessary, they will. Now 7mths pregnant, lying in an MRI tube, was not the most comfortable experience, I can tell you. A week or so later, I went back to the Dr, and he showed me my MRI. It was only an MRI of the brain, I didn't have a spinal one at this stage. It showed that I had some white patches, that as he said were not normally seen in the brain MRI of somebody my age. I was 29 years old at this stage. He mentioned MS, and I remember that it was the disease that he thought I had. However, I was pregnant, and nobody was going to diagnose me at that point. Through my own reading and information gathering since then, it's actually very rare for somebody to experience their first attack of MS during pregnancy. Most people are very healthy, MS wise, during. It's not the first time i've been considered "rare" though, so I guess I can't rely on that! So off to the hospital I went for some Intravenous Methylprednisolone for 3hrs a day for 3 days.
From then until my third son was born in January 2007, I got better, and was eventually left with only a small amount of numbness in the tips of my fingers of my left hand. Because I got better, and my health returned to almost normal, the thought of 'maybe MS" never really entered my mind. Perhaps if I had spent more time thinking about it and considering it, it might have made the actual diagnosis easier to deal with?? Who knows. So the youngest was born, and a life of just managing to hold it together and severe sleep deprivation began! (oh the joys of babies!). Whilst walking one day, in May 2007, the corner of the left side of my mouth was tingling and became numb. The numbness of my fingers got worse and started travelling up my arm, the left side of my face and head was all numb, so I went back to see the "horrible" neuro. I went for another MRI, and it showed that the white patches in my brain had got larger and there were more of them. The Dr showed me the MRI, and pointed it all out in detail, of which I really can't remember what he said, and then he said "so, yes, you have MS". We then went and sat down at his desk, he got out his prescription pad, and proceeded to ask me what medication i'd like to take. Now I don't like think that I was or am an unreasonable person, but for fucks sake, how the hell was I supposed to know what drug to take? Two minutes beforehand, as far as I was concerned, I didn't have MS. I really don't think that it's normal (unless you are a hypercondriac), to go researching what medication you may take for a disease that nobody has formerly told you that you have. At that point, I didn't know an awful lot about MS, and definitely didn't know what drugs were available for it. So I just let him go with whatever he thought was best. Whilst he was writing out the script, I looked down at my 4 year old son, who was sitting on the floor, and it hit me. The enormity of it, and I started to cry (which is so completely NOT inappropriate considering), and he looked up at me and said...... wait for it, this is the clincher......."Oh goodness, what's wrong???? Now, I can laugh about it, and it certainly makes an amusing story, but I can tell you, at the time I was the furtherest away possible from laughing. At that time I swore to myself that I was NEVER going to set foot in that office again, and I never have, thank god for that!!
I was at that point without a neurologist, however he had got me in contact with the MS Society, and I went to see a wonderful nurse there who instructed myself and my hubby on how to inject myself and all that. I was put on Rebif, which is an interferon, a subcutaneous injection 3 times per week. I started my first injection at just half the dose, because most people have fairly nasty side effects. Being a nurse myself, I had no problems at all with doing the injections as a solo exercise. After my first dose, I upped it to the normal dose. Funnily enough, and I think I am in the minority, but I didn't experience an awful lot of side effect from the medication. My MS nurse was very surprised. I took panadol regularly to combat any fever, and I was ok. It did make me feel lethargic and overall, just very blah, if that makes sense. I didn't realise how blah, until I stopped taking it, but I continued on it, every Mon, Wed and Fri for a year.
I can't really describe how I went emotionally, because at that point I was dealing with it more emotionally than physically. I know that I became very depressed. I cried all the time, and I mean ALL the time. When I picked up the older boys from school I was crying, I cried in the car, the house, in my bedroom, everywhere. It seems that it was the only way that I could deal with it at all. I was angry. I remember yelling and screaming at my husband that I hated my life, I hated it. I knew I needed help. So I went to my local GP and got some good old anti-depressants, those which I am still on today. But it took a while to get the courage up to actually go and do that. It was probably 5mths or so after the diagnosis. For some reason, despite being diagnosed with such a disease, you feel like you should cope with it, like it shouldn't be that bad, certainly not requiring anti-depressants. They don't know if it's the actual diagnosis that makes people depressed (God, who wouldn't be), or it's a part of the disease process that contributes. I personally think it's part of the disease process, and you're pretty lucky if you can go on with life without them.
About 4mths after my diagnosis, in the October, I started getting sick.