MS–My story
My story
October 1981
I am not actually sure what month in 1981 it was, but, I was 18 years old and it was heading toward the years end.I was living with my boyfriend at the time and one day I woke up and the top half of my left leg was numb.Well, not exactly numb. Semi-numb? I dunno what the word for it is, but, it definitely did not feel right.
I remember at the time I thought maybe the contraceptive pill was causing me to have a stroke or something (yes, I have always been a drama Queen)……………..that being said, though, I am not one to go running to the doctors for no real reason but this numbness bothered me enough to visit my GP, so, it WAS real enough for me to take action.
When I told my GP, he stuck a pin in my thigh and asked me if I could feel it and I said yes, because I could, but, not properly. I felt something, but, not the sharp, pricking sensation I should have felt.
Still, he told me, if I could feel anything, my leg was not numb and I was probably over tired or something and not to worry about it.
So, I didn’t. And after a couple of weeks, the numbness or whatever it was, went away…………….
March 1998
17 whole years before my next memory of anything being “wrong”. Maybe there was other stuff before that, but they were so minor I do not remember them.
March 1998,
I had to have surgery (D&C) and apparently, I kicked up quite a fuss while I was under the anesthetic. I have no memory of this, but, I was told I made quite an impression on all the theater staff that day. Apparently I was yelling and screaming and really going crazy.
When I woke up, I was on oxygen, due to the “bad reaction” I had to the general anesthetic. Once my oxygen levels were normal, they took me off the oxygen and let me go home.
I remember a couple of hours after I got home, my arms and hands started feeling strange. I cannot describe it properly, except to say that they felt heavy and I could not move them very well.
I went to bed that evening and awoke in the middle of the night and I needed to get up to go to the toilet.
Only trouble was, I could barely get out of bed. I could barely move. My legs felt like lead. I remember I did manage to get out of bed and I used my sons pram as a walking frame to walk to the bathroom and back and then I hopped back in to bed and went to sleep.
When I woke up the next morning, my legs, arms and hands were still feeling very heavy. I could barely move my fingers at all. It was really strange and to this day it amazes me that I did not ring the doctor, but, I did not. I put it down to the bad reaction I had to the anaesthetic, but, also, I was very depressed at that time and found it hard to make phone calls or even leave the house, so, I just kind of brushed it aside.
That morning, a nurse from the hospital actually rang me to see how I was because I had reacted so badly to the anaesthetic the day before. I told her that my legs, arms and hands were like lead and that I could barely move. She too put it down to a bad reaction to the general anaesthetic, but, told me if I was no better in a few days, to come into the hospital.
I gradually got better over the next couple of weeks and so, I had no more contact with the doctors at that time until around 3 weeks later, when I haemorraged and was in hospital for a few days. But, that was totally unrelated to the heaviness in my arms and legs so I did not mention it…………..
May 1999
I remember that around April of 1999 I decided to do some walking in one of my many attempts to lose weight.
It was ok for a week or so, until one day, I was walking near my house and for some reason the whole world started spinning.
That is the best way I can describe it and even though it only lasted for 30 seconds or so, it frightened me enough to send me straight home and I gave up my early morning walks from that day. lol lol
Around a month later, the spinning/dizziness came back, but, this time it did not go away. Not only did it not go away but, I could not stop vomiting, despite the fact I could not eat.
I could not move my head, even a quarter of an inch without the whole world spinning and me vomiting. I could barely walk, although, with help from my husband (at the time, we split up in 2000), I did make it to the car and he drove me to the doctors office, in Bacchus Marsh.
What I remember most about that 15 minute drive is that, me who at the time had a dreadful fear of cars and in particular, my husbands driving, actually enjoyed that drive because for the first time in days I was not dizzy or vomiting.
It really was quite bizzarre and for the first time in my life, I was happy that my husband was speeding because the faster he went the less sick I felt. It was really weird.
By the time we got to the doctors surgery, I was feeling quite confident that I would be able to walk and not vomit.
Of course as soon as I got out of the car, the vertigo and vomiting started again……………
I was really scared. I had never been so sick in my whole life. It was terrifying and I was convinced I had a brain tumour (I have already mentioned I am a drama Queen. lol)……
The doctor assured me that he was certain that I had a severe inner ear infection and not a brain tumour.
He did say that if I was to come back in a couple of months with the same symptoms, then, he would be thinking brain tumour, but, in all honesty, he believed it was a severe middle ear infection and that is why my balance was almost non existant.
He gave me some anti nausea tablets (can’t remember what) and I was told to be careful and only take them as prescribed because if you took too many it could cause your muscles to seize up or something……….
I was very careful about the dose I took and I do remember they did not seem to work anyway, but, something must have helped because within a few days, though my balance was still bad, the world no longer spun around and I was no longer vomiting. So, I put the whole incident behind me and got on with my life…
August 1999
I went away for the weekend with a friend. It was the end of winter and although the weather was cold, I remember I was hot, all the time. This is my first memory of heat intolerence, but, I have had heat intolerance ever since then.
On the monday, I was feeling a bit off balance and though I feared the Vertigo was coming back, I convinced myself it was my imagination.
Unfortunately, it was not my imagination and by the end of that week I was so very ill, I could not get out of bed and the doctor had to do a home visit.
Now I really was convinced I had a brain tumour. I remembered what the doctor at Bacchus Marsh had said and so, because I had a return of the dizziness and vomiting, I was sure there was something really seriously wrong.
This doctor (who became my permanent GP after this) sent me to a specialist, who sent me to the emergency department of Western general hospital.
I remember my ex husband, wheeling me in a wheel chair and me holding a dish and vomiting in to it, in the street on the way from the car to the hospital and then in the public waiting room and me not giving a damn that I was sitting there in full public view, constantly vomiting. LOL LOL
I was really ill. I actually lost something like 12 pounds over a 10 day period, because I could keep nothing down. All I could manage was a tiny sip of water every now and then and I would still vomit. I ended up on a drip because I was so dehydrated.
I ended up in hospital for a week with this lot of vertigo. I was not allowed to go home until I could stand up and dress myself without help of any kind.
Again, I was told it was an inner ear infection or virus.
By now I definitely did not believe that. I truly thought I had a brain tumor.
September 1999
I got out of hospital on the Friday and by Sunday, I thought that there was something wrong with my right eye. My vision seemed to be not so good. Again, I thought it was probably my overactive imagination.
Again, I was wrong. Within a week I was totally blind in my right eye.
Of course, to me, this was just another sign that I had a brain tumor. lol lol
My GP sent me to an Opthamologist and though he did not tell me what was wrong with me, he did seem to know what was wrong and sent me with a referal to the emergency department of the eye and ear hospital.
After some tests, I was promptly admitted as an in patient, put on a drip of IV steroids and booked in for a MRI the next day.
To cut a long story short, the results of the MRI were that I had alot of plaques on my brain and with all the other signs, they gave a diagnosis of definite Multiple Sclerosis.
Appointments were made for me with a neurologist (who by coincidence, went to the same school as me in 4th grade. He sat behind me in school and I remembered him immediately.)…………
He has been my neurologist ever since.
November 1999 to November 2007
Alot has happened since that diagnosis. My marriage broke up, permanently, in mid 2000. I have been on my own ever since. My choice, but, lately, I finally feel ready to maybe consider dating. Maybe. Only if the right person comes along………..Anyway, I was on weekly Avonex injections from November 1999. I went off Avonex in December 2001 and in March 2002 I started on Copaxone daily injections. I had to go off them in December 2006, due to severe post injection reaction (supposedly rare, but, they became constant for me and my body could no longer tolerate it)………I had been mainly relapse free during the time I was on medication until March, 2007.What I mean by that is although I did not have any major MS attacks (except for a mild bout of vertigo in August 2005), I have had all the other MS stuff that is annoying, but not major.Numbness, tingling, fatigue, balance issues, cognitive issues, etc etc……………… Nothing major and easy to learn to live with.
Unfortunately, 2007 has not been a good year for me. In March and April this year, I had paralyisis attacks down the right side of my body.
I would feel it starting in my right foot and it would gradually creep all the way up my right side, even to the right side of my face.
These attacks lasted up to a minute each and I was having well over 100 attacks a day when it was at its worst.
During these attacks I lost all strength in my right foot, leg, arm and face. It was wierd but, not too bad.
In July I had a major attack of Optic Neuritis which left me blind in my right eye for a few months. I now have most (but not all) of my eyesight back. I figure it is as good as it is going to get. I can live with that.
In September my liver acted up. I had been on some trial oral drugs, for my MS, but, monthly blood tests for liver function showed my levels going up. They hit 1000 in September and I had to immediately go off the drug. It took some weeks for the level to come down to 50, which is considered normal.
I had dreadful fatigue when my liver was not functioning properly.
Today, I am feeling better than I have all year. I am very grateful.
I have an appointment with my neurologist on Nov 27th and I have been given the next few weeks to decide if I want to go on beta interferon injections again.
I did have severe depression while on Avonex (which is why I stopped taking it). I am thinking I will go on Rebif. I have heard good things about it and I like the idea because you only inject it every 2nd day and it is not an intra muscular injection like Avonex.
So, I think I will give that a try…………..
January 2008
I started Betaferon injections in early January and so far, so good. Learning to mix the drug was the hardest part, but, now I am so used to it, it is second nature to do it. I inject every 2nd day.Things are going well. My right eye is still a bit dodgy. I will never get all the vision back and some days my eye is better than other, but, for the main part, I am feeling better than I have for several years. :0)
June 2008
Things are ok. I do not have all the vision back in my right eye and I guess if I have not got it now, I won’t get it back. I am not cross stitching as much due to vision issues, but, a whole new world of card making and scrapbooking have opened up for me and I have even become a demonstrator for Stampin’ Up (see my main blog page).
I have lost 33 kilos in weight and though I now need a walking stick (I had a spate of bad falls in March due to bad balance and vision issues), I am walking for over 7 hours a week. I walk for 4 hours delivering junk mail, my delivery trolley keeps me balanced and stops me from falling over and I walk for at least 3 hours, using my walking stick or on my electric treadmill.
Despite the disabilities due to my MS, I am coping really well and doing the best I can with what I have got and because of the weight loss (I still need to lose a bit more) I am feeling wonderful. The exercise I do drives away any depression and I feel happy, settled and optimistic. Yes, life is good and I am grateful.
JULY 2008
On the advice of my neurologist, I am starting on Tysabri infusions on August 12. I am nervous about it, due to liver function problems I had when I was on a trial drug (Firategrast) last year. It is similar in make up to Tysabri and it caused my liver count to go from below 50 to over 1000. I was quite ill from it.
My neuro says that just because I had liver function issues on Firategrast, it does not mean I will have similar problems on Tysabri IV infusions. I will be having frequent blood tests to make sure my liver function stays at a normal number.
Heres hoping……………….
I really am very nervous about all this, but, I am prepared to give Tysabri a try.
AUGUST 11TH
Tomorrow is T day (Tysabri day). I am really, really scared (understatement). I will check back in after the fact. ;0)
AUGUST 30TH
I forgot to report back after my first Tysabri infusion.
It all went really well. I had no nasty side effects and the actual IV infusion took an hour and then the put water through the drip and that took another half hour or so.
So far, so good. My next infusion is on September 9th. The hospital rang me yesterday to inform me I am booked in for a MRI on the 2nd. I thought it was the 9th and I have told them I cannot do it on the 2nd, so they have re booked it for Friday the 19th.
Before I have my 2nd Tysabri infusion on Sept 9th, I have to have a blood test to make sure my liver function is ok. I reckon it is because I feel fine. I don’t think the Tysabri has done anything to upset it - yet. I will be very disappointed if the blood test comes back bad because it will mean I can no longer have Tysabri and I really do feel Tysabri is helping me so far. I certainly have more energy than I have had for a long time………
Heres hoping all goes well on September 9th.
