Ok, where was I? Oh yes, October, I started to get sick. My best friend and I planned a trip to Melbourne. We both had 8 and 9mth old babies, so we really needed some "me" time. I definitely needed some "me" time. The only problem with it all was that I hadn't told my bestie about my diagnosis. I know that sounds stupid, because she should have been one of the first people I told, but I just wasn't ready to have my disease completely change my life. I was also in the "denial" phase of grief, so I just wanted to go along as normal and pretend that my MS just didn't exist. I had cried enough to fill numerous amounts of buckets, and I just wanted a break. So, we went shopping, and I lived for 3 days on not enough money, too much alcohol, and not enough sleep. And I coped really well, I walked in high heels without stumbling, I didn't feel too tired, all until we were sitting at a restaurant having lunch, outside, on a hot and humid day in Melbourne. The pain started. It's really hard to describe, but it's like what you imagine putting your hand in a power point would feel like. Electric shocks. Travelled up my left arm from my fingers, all the way up the left side of my face. And it came in waves, so it was a shock that would settle for 10 seconds, then another one, and another, and another. I remember putting my head down on the table, closing my eyes, pretending that I was really tired. Then I got up and managed to get to the toilet. I sat on the loo crying and clutching my face. The worst thing about it all, despite the pain, was that I couldn't talk to my best friend about it. I couldn't cry on her shoulder or hold her hand until it ended, I had to go on pretending that I was fine. It did end. It settled and I did the most brilliant acting job, pretending I was fine for the rest of the trip home (well at least I think I did). I did fall apart a little when I got home. I ended up sleeping in the spare room because even though I was so tired, I was so anxious about the pain and what was happening, that I couldn't sleep. But I did sleep, with the help of some prescription anti-anxiety tablets (which I still do take at times).
So at this time, I was waiting to see a new neurologist. I had decided that maybe a female Dr would be a little more compassionate. I'm not sure how long it was until I saw her, but not long. I kept it all together really well, until I sat down opposite her in her office. And god knows what it would have looked like to her, but I lost it, completely lost it. I was crying, and shaking and trying to explain things whilst crying like a possessed child. Now I can tell you all, that being female, does not make you more compassionate. She sat there, whilst I blubbered like an idiot, and then (I think), she sort of explained why I was getting the pain (it's neuropathic, caused by the damage to my nerves), and then wrote me a prescription for nerve pain tablets (Lyrica), sleeping tablets (Temazepam), anxiety tablets (Alprazolam), and more anti-depressants (Zoloft). And that was it. So I left, feeling a bit better because I thought pharmacology would be able to make everything better. Unfortunately, the nerve pain still happened at different times despite the Lyrica, and despite increasing doses of it, the Alprazolam helped with the anxiety caused by the pain, and Temazepam didn't really help with the sleeping. So gradually things got worse.
In March, I got gastro (yuk), it was a Friday night, and I had been up most of the night vomiting. I was supposed to go out with my girlfriend on the Saturday night, and I really wanted to go. I guess I was still in that phase where I was refusing to let the disease dictate my life. Hubby said I shouldn't go, and I knew that I was too sick, but I was determined. Determined I would call it, stubborn as hell is what my husband would call it! So I got up on the Saturday morning, and went to the local indoor pool with my eldest children for their swimming lesson. The pool was hot, humid and foul. I was sitting there, on the bench, and I knew I didn't feel well. Then the pain started. I managed to stagger to the open sliding door. It had a ledge going out, and I completely fell over it, and landed on the grass outside. It was agony. The pain is excruciating. It's very difficult to explain, but I have had 3 children, with only gas, and I can tell you, I would rather experience labour pain. People at the pool were great though. I had so many people around me wanting to help, even though I could only lay there, in the foetal position and groan. I remember one of the swimming instructors talking to me, and I remember her telling me that her sister had MS and wasn't feeling too great at the time. It was comforting to know, in that situation, that somebody at least had a bit of an idea what was going on. Anyway, they called an ambulance, and I was taken to the hospital. By the time I got there the pain had stopped, they rehydrated me and I went home.
Things got worse from then on. The pain came more and more frequently, until sometime in May, I couldn't even get out of bed. Everytime I got up to go to the toilet the pain came. I look back on it now and I should have gone to the hospital then, but I know that there isn't a lot that anybody can do for MS, so I didn't really think there was much choice other than to lay there and take it. I did call my neurologist though. I wanted to let her know what was going on and what I should do. So I called her, told her what was happening and she told me that it didn't sound like an MS problem, and that I should go to the GP and have my blood pressure checked. Now this is a specialist, that studied for years and probably drives a brand new shiny BMW!! I think that she probably got her qualification from a weetbix packet. I knew it was MS, I wasn't stupid, I was the one experiencing it. So I layed there, bed-ridden for about a week, and then the pain came whether I was upright or not. Eventually, after pain coming all night, with a 10minute break between episodes, hubby said that he would have to take me to the hospital. I didn't argue, I just wanted somebody to do something about the pain. So at the hospital I had a big shot of morphine, which did nothing for the pain, and went for an MRI. The scan clearly showed that I was having an "acute relapse". My lovely neurologist (said in a very sarcastic tone) looked at the scans, confirmed it and promptly put me under the care of another doctor as she was going away for a conference. In hindsight, best thing that she ever did for me. Because the Dr (a physician), was lovely, compassionate, helpful, sympathetic, all the nice words that you can think of. So I was put on subcutaneous morphine, my lyrica dose was upped again, and I had 3 days worth of methylprednisolone. 3 weeks I was there for. The morphine, unfortunately did nothing except make me incredibly constipated. Neuropathic pain is traditionally very difficult to treat (yay!), not responding to opioids in a lot of cases. So I basically waited until the episode got better on it's own. My physician, who I cannot praise enough, got me in contact with the Pain Clinic, from the biggest hospital in this state, and the consultant anaesthesiologist from the clinic came to see me. After 2 weeks in the hospital I went home. I was painfree for a couple of days, then it returned and within the week I was back in hospital again. In the time between my last outside appointment with the terrible, female neurologist, I had made an appointment with my current neurologist. I had made them aware that I was in hospital and couldn't make the inital appointment, so he came to the hospital to see me instead. In the 3rd week that I was in the hospital, my neurologist and I decided that Rebif was not working, was not doing it's job. For me to have such a bad relapse, whilst on the medication, indicated that it was not effective. We talked about Tysabri and he wanted to know how I felt about going on it. Hubby and I had talked about it beforehand, and come to the conclusion that there was no choice. We had to give it a try. (I'll put some more information about the available MS drugs in a different post). So at the end of the 3rd week in hospital, I started on Tegretol (Carbemazepine), which is an anti-epileptic drug, but can work for neuropathic pain, I went home, thankfully I didn't return, and I was pain free.
Thursday, November 25, 2010
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.
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.
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