Multiple Sclerosis - My Symptoms
The first time I was formally diagnosed with Multiple Sclerosis (MS) was in November 1980. I was re-diagnosed in 1990 after being told by my new doctor that I didn't have MS, and then again in 2012 by a great NHS team and Consultant (having had my previous medical records destroyed).
I thought I would list the symptoms I have had over the past 5 decades and hope they are of some value or interest to anyone else who may be wondering what the symptoms are. I have recorded these at the back of my latest book, but here they are for you to read:
I thought I would list the symptoms I have had over the past 5 decades and hope they are of some value or interest to anyone else who may be wondering what the symptoms are. I have recorded these at the back of my latest book, but here they are for you to read:
MY LEGS; the words that come to my mind, buzzing, tingling, pins and needles and sometimes numbness, but numbness I could feel. That sound's daft, but it's the best way I can describe it. Not necessarily all at once, one at a time, or one or two together. Also sometimes I would have a feeling as if lead weights had been attached to both my legs. They would feel so heavy that it was hard for me to move them. And the worst of all, the day they just would not move forward and I ended up having to sit on the pavement for I don’t know how long. This happened more than once, but fortunately I was in my own home the other times it happened.
MY HANDS; the same tingling, sometimes numb and lots of dropping things, because I would misjudge my hold on a cup glass or plate, or anything else that I was trying to pick up and hold onto, which left me with lots of broken crockery in the kitchen!
TINGLING; along with a feeling of pins and needles across my shoulders, sometimes on one side or the other, and sometimes both at the same time. This could also be very painful. It would come and go over the years for no particular reason.
TIREDNESS; as I have said it was like a wave coming over me out of the blue and there was no fighting it. One minute I would be fine and the next I would be feeling so exhausted that I had no choice but to sit down or lie down, before I fell down.
FEELING LIKE A FLY ON THE WALL; as if I was not there, not connected. A feeling as if I was not part of myself. As if I was not part of anything at all. (Very odd).
CHOKING SENSATION; when I was lying in bed at night just as I was beginning to fall asleep, I would sometimes suddenly find myself not being able to breathe, as if my throat had somehow closed. I would gulp and swallow in air, and then realise I was still breathing. This was a very strange and a horrible sensation, and quite frightening while it lasted, but it did pass quickly. And it definitely had nothing to do with acid reflux.
MY EYES; I have described the net curtain that sometimes appeared from nowhere, and when it did appear I had to strain my eyes to be able to see through it, which in turn gave me a bad headache. This could last for a few weeks, then for no reason the net curtain would disappear along with the headache. Also in any brightly lit shop or shopping mall, within minutes of entering I would begin to feel panicky. This was due to the lighting systems, they would (and still do on occasions) flicker slightly, but enough to cause me a problem. Sunglasses put a stop to this symptom. Also on more than one occasion I suffered from pupil dilation in one eye, the episodes didn’t last very long, but when it happened it was very uncomfortable.
KNOCKING MYSELF; against the side of a wall or door frame as I turned to go into a room, or, as a corridor had a left or right hand turn. I would bang my shoulder against it because I was forever misjudging the distance. Which in-turn left me with a lot of bruises!
MY SPEECH; when I was very tired my speech would become very slurry and I would sometimes say my words backwards. This was quite funny for everyone listening to me, but not very funny for me. It sometimes sounded as if I’d had too much to drink. I would also find some words impossible to say. I could ‘see’ them in my mind, but for the life of me, I couldn’t pronounce them.
FACIAL TENDERNESS; from about fifteen years of age, when I started to try and apply make up to my face, especially around my eyes, I couldn’t. Because my face was very sore to the touch, it really hurt me when I applied even the slightest pressure. During my late teenage years and early twenties I periodically tried again, but by my mid twenties I gave up trying. So no makeup for me, lipstick didn’t hurt to apply, but I never did learn how to apply anything else. Consequently I still don’t wear very much makeup, as I never learned how. Thankfully my face has not hurt to the touch since my late thirties.
MY WATER WORKS; this next symptom has been with me since I was about sixteen years of age and this is one of the symptoms that I still have. But for me it’s never been a problem, so I’ve never given it much thought. When anyone has asked me over the past thirty odd years if I have a problem with my water works, I have always answered no. Because I always thought they meant did I occasionally have lack of control and the need to wear incontinence pads. What I have (apparently) is urinary retention, due to lack of muscle tone in the bladder, but how the MS has caused this I still have to find out. When I go to the loo to pass water, I could pee for England sometimes. I have often thought (but I know I haven’t) got two or even three bladders, because as one flow finishes a second or two later, another flow starts. I just have to be patient and make sure my bladder is completely empty before I get up off the loo seat. Okay that was a bit embarrassing for me, but I promised myself that I was going to be one hundred percent honest with everything I write down. So if you ever go out with me for the night and I’m in the ‘ladies’ for a while, it’s not that I’ve fallen down the toilet bowl (although I have done that before when David left the toilet seat up one night and I wasn’t looking) it’s just that my bladder will be very full and it takes a few minutes to empty.
FEELING LOPSIDED AND FALLING SIDEWAYS; Feeling as if I was going to fall down because I felt lopsided and obviously when I felt like this, I just wanted to lie down before I fell down. And I did fall sideways, quite a few times.
BRAIN FUZZ; not being able to think straight, not being able to remember things that I had just said. Again tiredness and stress would bring this on. The more stressed I got, the worse this and my speech would become. Even now, if I'm very tired or upset or stressed, my speech will be affected.
FUNNY FEET; this one has to be experienced to see the funny side. Try and imagine what it would feel like to walk on bubble wrap for weeks on end, that’s exactly what it feels like. The soles of your feet full of bubbles. It feels so real when it happens that I would keep touching the bottom of my feet just to reassure myself that I didn’t have bubbles in them. This would last about four to six weeks and then disappear. It has happened to me about once in every seven years over the past forty odd years, so it’s not very often it happens, but it does.
VOICE TIREDNESS; I can feel my voice starting to trail away to a mere whisper, on the rare occasions this still happens, I know it’s time to be quiet, or I could spark off the worst symptom of all, problems with my throat.
BLANK MEMORY: Many years ago I was out shopping in a department store in our local town when I went to the cash desk to pay for the things I wanted to buy. I went for my cheque book to pay for the items and just as I was about to sign it I stopped in my tracts, because I didn’t know my own name. I didn’t know who I was! My mind was a complete blank. I stood at the counter not knowing what to do next. After a minute or two of me looking all around me as I panicked inside, I told the shop assistant there was another item in the store that I thought I might want to buy and I would go and have a look at it before I paid for everything. I told her I would be back in a minute as I walked away from her trying not to cry. I wandered around for about five minutes and then my name suddenly came back to me, in just the same way as it went. I walked back to the counter where I had left the items I wanted, told the shop assistant that I didn’t want anything else, so I finished writing out the amount and signed my name. When she gave me the bag with my goods in, I couldn’t wait to get out of the shop and go back to my car where I sat and cried. It only happened the once thank goodness. It’s horrible when you don’t know who you are anymore, even if it is for only a little while.
LOST LEARNING: When we are little we instinctively learn how to do things. We breath with no thought on our part. We suck from birth without anyone showing us how to, it’s instinctive. Then we learn to drink and chew our food, so when I forgot how to do something as basic as swallowing my food, trust me, it was very frightening. I was sitting at our table eating my tea with my husband not thinking of anything in particular enjoying my meal when I was about…….and my mind went a complete blank, as if someone had turned the switch of in my brain. I sat there thinking to myself, now what do I do? So I did have some brain function and then I realized that I was sitting with a mouthful of food and I didn’t know what to do with it. Then it came to me that I needed to swallow it, but I didn’t know how to. I started to feel a bit panicky inside so I put my hand up to my mouth and gently emptied the contents of my mouth into my hand without my husband noticing what I was doing. I got up from the table on the pretext of getting a glass of water and I emptied the contents of my hand into the kitchen bin. As I was nearly finished my meal I told my husband that I’d had enough, so I emptied what was left on my plate into the bin as well, because I still hadn’t a clue how to eat and swallow. I sat with a glass of water for well over an hour before I felt that I could remember how to swallow and then find the courage to try. This has happened a few times over the years, but it will be when I’m feeling stressed or very tired.
THROAT: I have already mentioned what happens to me sometimes as I’m falling asleep, but this next problem is different. It can happen at any time during the day, my throat appears to almost close and I can’t breathe. Only once has my throat closed completely. One night when I was all alone in our home, I stupidly had my head tilted back, as I was trying to get the juice out a pomegranate. A drop of juice hit the back of my throat and I was in serious trouble. I tried to breath, (stupidly) through my mouth and I couldn’t. The harder I tried to breath the more frantic I became. Fight and flight response must have taken over, because I ran to our front door, opened it and knelt down on the door step trying desperately to get air into my lungs through my mouth. I can still remember the horrible noise I could hear myself making, as if a wild animal was being skinned alive. All the while this was happening I was screaming out to God in my head to help me. I’ve never been so frightened in my life. At this point I heard my ‘fathers’ voice shouting at me, ‘calm down Isabella, calm down, I’m here beside you, calm down’, he kept repeating this to me. Obviously I did, because I’m still here to tell the tale. Thank the Lord my throat has never completely closed again. But it’s got very close on a few occasions. I think because of that one terrifying experience. I must be honest and say, when it does start to happen I do panic....and not without cause. There are a number of things that can trigger my ‘almost throat closure’ a tickle at the back of my throat, forcing me to breathe through my mouth, when I have a cold. A very bad coughing fit can spark it. A drop of fluid can catch the back of my throat and start an episode. I once breathed in when I had a crumb in my mouth, the crumb caught the back of my throat and that sparked it. And as stupid as this sounds; an intake of breath can catch my throat and start me gasping for breath. I can assure you it’s not food or drink coming back up or going down. I feel as if I can’t get any air. It’s very frightening while it is happening. Just to be on the safe side, I have learned to eat my food slowly (although as I have said food has never been a problem) and I try to remember not to talk when I’m drinking or eating, because I once spoke while eating and a tiny piece of ground pepper corn caught the back of my throat and sparked and episode. When it does happen I have to try and stay calm (while I’m panicking inside and shouting out to God in my head, to help me) Rescue remedy helps, so I keep a bottle in the fridge and a bottle in my handbag, just in case. It helps to calm me down. I need to remember to ‘breath’ in through my nose, not my mouth and that’s not easy when you are panicking; (and almost impossible if you have a tickle in your throat, or your nose is blocked because of a cold). This is horrible when it happens, and yes it does still happen to me on rare occasions, when I’m very tired, or stressed, or when my vocal cords seem to want to give up, all because of tiredness.
I have recently been told that what I have just described above is called a ‘Laryngospasm’ or also known as ‘dry drowning’ and the terrifying noise I heard myself make is called a ‘stridor’. This is all very scary when it happens, but it does pass. I will explain how I found this all out as an update for you in my next book. But I understand now why this happens, it's a warning for me to rest and be kind to myself. I like those words, be kind to myself. If we were all a little bit kinder to ourselves, we would all feel so much better. So let’s all, be kind to ourselves.
MY HANDS; the same tingling, sometimes numb and lots of dropping things, because I would misjudge my hold on a cup glass or plate, or anything else that I was trying to pick up and hold onto, which left me with lots of broken crockery in the kitchen!
TINGLING; along with a feeling of pins and needles across my shoulders, sometimes on one side or the other, and sometimes both at the same time. This could also be very painful. It would come and go over the years for no particular reason.
TIREDNESS; as I have said it was like a wave coming over me out of the blue and there was no fighting it. One minute I would be fine and the next I would be feeling so exhausted that I had no choice but to sit down or lie down, before I fell down.
FEELING LIKE A FLY ON THE WALL; as if I was not there, not connected. A feeling as if I was not part of myself. As if I was not part of anything at all. (Very odd).
CHOKING SENSATION; when I was lying in bed at night just as I was beginning to fall asleep, I would sometimes suddenly find myself not being able to breathe, as if my throat had somehow closed. I would gulp and swallow in air, and then realise I was still breathing. This was a very strange and a horrible sensation, and quite frightening while it lasted, but it did pass quickly. And it definitely had nothing to do with acid reflux.
MY EYES; I have described the net curtain that sometimes appeared from nowhere, and when it did appear I had to strain my eyes to be able to see through it, which in turn gave me a bad headache. This could last for a few weeks, then for no reason the net curtain would disappear along with the headache. Also in any brightly lit shop or shopping mall, within minutes of entering I would begin to feel panicky. This was due to the lighting systems, they would (and still do on occasions) flicker slightly, but enough to cause me a problem. Sunglasses put a stop to this symptom. Also on more than one occasion I suffered from pupil dilation in one eye, the episodes didn’t last very long, but when it happened it was very uncomfortable.
KNOCKING MYSELF; against the side of a wall or door frame as I turned to go into a room, or, as a corridor had a left or right hand turn. I would bang my shoulder against it because I was forever misjudging the distance. Which in-turn left me with a lot of bruises!
MY SPEECH; when I was very tired my speech would become very slurry and I would sometimes say my words backwards. This was quite funny for everyone listening to me, but not very funny for me. It sometimes sounded as if I’d had too much to drink. I would also find some words impossible to say. I could ‘see’ them in my mind, but for the life of me, I couldn’t pronounce them.
FACIAL TENDERNESS; from about fifteen years of age, when I started to try and apply make up to my face, especially around my eyes, I couldn’t. Because my face was very sore to the touch, it really hurt me when I applied even the slightest pressure. During my late teenage years and early twenties I periodically tried again, but by my mid twenties I gave up trying. So no makeup for me, lipstick didn’t hurt to apply, but I never did learn how to apply anything else. Consequently I still don’t wear very much makeup, as I never learned how. Thankfully my face has not hurt to the touch since my late thirties.
MY WATER WORKS; this next symptom has been with me since I was about sixteen years of age and this is one of the symptoms that I still have. But for me it’s never been a problem, so I’ve never given it much thought. When anyone has asked me over the past thirty odd years if I have a problem with my water works, I have always answered no. Because I always thought they meant did I occasionally have lack of control and the need to wear incontinence pads. What I have (apparently) is urinary retention, due to lack of muscle tone in the bladder, but how the MS has caused this I still have to find out. When I go to the loo to pass water, I could pee for England sometimes. I have often thought (but I know I haven’t) got two or even three bladders, because as one flow finishes a second or two later, another flow starts. I just have to be patient and make sure my bladder is completely empty before I get up off the loo seat. Okay that was a bit embarrassing for me, but I promised myself that I was going to be one hundred percent honest with everything I write down. So if you ever go out with me for the night and I’m in the ‘ladies’ for a while, it’s not that I’ve fallen down the toilet bowl (although I have done that before when David left the toilet seat up one night and I wasn’t looking) it’s just that my bladder will be very full and it takes a few minutes to empty.
FEELING LOPSIDED AND FALLING SIDEWAYS; Feeling as if I was going to fall down because I felt lopsided and obviously when I felt like this, I just wanted to lie down before I fell down. And I did fall sideways, quite a few times.
BRAIN FUZZ; not being able to think straight, not being able to remember things that I had just said. Again tiredness and stress would bring this on. The more stressed I got, the worse this and my speech would become. Even now, if I'm very tired or upset or stressed, my speech will be affected.
FUNNY FEET; this one has to be experienced to see the funny side. Try and imagine what it would feel like to walk on bubble wrap for weeks on end, that’s exactly what it feels like. The soles of your feet full of bubbles. It feels so real when it happens that I would keep touching the bottom of my feet just to reassure myself that I didn’t have bubbles in them. This would last about four to six weeks and then disappear. It has happened to me about once in every seven years over the past forty odd years, so it’s not very often it happens, but it does.
VOICE TIREDNESS; I can feel my voice starting to trail away to a mere whisper, on the rare occasions this still happens, I know it’s time to be quiet, or I could spark off the worst symptom of all, problems with my throat.
BLANK MEMORY: Many years ago I was out shopping in a department store in our local town when I went to the cash desk to pay for the things I wanted to buy. I went for my cheque book to pay for the items and just as I was about to sign it I stopped in my tracts, because I didn’t know my own name. I didn’t know who I was! My mind was a complete blank. I stood at the counter not knowing what to do next. After a minute or two of me looking all around me as I panicked inside, I told the shop assistant there was another item in the store that I thought I might want to buy and I would go and have a look at it before I paid for everything. I told her I would be back in a minute as I walked away from her trying not to cry. I wandered around for about five minutes and then my name suddenly came back to me, in just the same way as it went. I walked back to the counter where I had left the items I wanted, told the shop assistant that I didn’t want anything else, so I finished writing out the amount and signed my name. When she gave me the bag with my goods in, I couldn’t wait to get out of the shop and go back to my car where I sat and cried. It only happened the once thank goodness. It’s horrible when you don’t know who you are anymore, even if it is for only a little while.
LOST LEARNING: When we are little we instinctively learn how to do things. We breath with no thought on our part. We suck from birth without anyone showing us how to, it’s instinctive. Then we learn to drink and chew our food, so when I forgot how to do something as basic as swallowing my food, trust me, it was very frightening. I was sitting at our table eating my tea with my husband not thinking of anything in particular enjoying my meal when I was about…….and my mind went a complete blank, as if someone had turned the switch of in my brain. I sat there thinking to myself, now what do I do? So I did have some brain function and then I realized that I was sitting with a mouthful of food and I didn’t know what to do with it. Then it came to me that I needed to swallow it, but I didn’t know how to. I started to feel a bit panicky inside so I put my hand up to my mouth and gently emptied the contents of my mouth into my hand without my husband noticing what I was doing. I got up from the table on the pretext of getting a glass of water and I emptied the contents of my hand into the kitchen bin. As I was nearly finished my meal I told my husband that I’d had enough, so I emptied what was left on my plate into the bin as well, because I still hadn’t a clue how to eat and swallow. I sat with a glass of water for well over an hour before I felt that I could remember how to swallow and then find the courage to try. This has happened a few times over the years, but it will be when I’m feeling stressed or very tired.
THROAT: I have already mentioned what happens to me sometimes as I’m falling asleep, but this next problem is different. It can happen at any time during the day, my throat appears to almost close and I can’t breathe. Only once has my throat closed completely. One night when I was all alone in our home, I stupidly had my head tilted back, as I was trying to get the juice out a pomegranate. A drop of juice hit the back of my throat and I was in serious trouble. I tried to breath, (stupidly) through my mouth and I couldn’t. The harder I tried to breath the more frantic I became. Fight and flight response must have taken over, because I ran to our front door, opened it and knelt down on the door step trying desperately to get air into my lungs through my mouth. I can still remember the horrible noise I could hear myself making, as if a wild animal was being skinned alive. All the while this was happening I was screaming out to God in my head to help me. I’ve never been so frightened in my life. At this point I heard my ‘fathers’ voice shouting at me, ‘calm down Isabella, calm down, I’m here beside you, calm down’, he kept repeating this to me. Obviously I did, because I’m still here to tell the tale. Thank the Lord my throat has never completely closed again. But it’s got very close on a few occasions. I think because of that one terrifying experience. I must be honest and say, when it does start to happen I do panic....and not without cause. There are a number of things that can trigger my ‘almost throat closure’ a tickle at the back of my throat, forcing me to breathe through my mouth, when I have a cold. A very bad coughing fit can spark it. A drop of fluid can catch the back of my throat and start an episode. I once breathed in when I had a crumb in my mouth, the crumb caught the back of my throat and that sparked it. And as stupid as this sounds; an intake of breath can catch my throat and start me gasping for breath. I can assure you it’s not food or drink coming back up or going down. I feel as if I can’t get any air. It’s very frightening while it is happening. Just to be on the safe side, I have learned to eat my food slowly (although as I have said food has never been a problem) and I try to remember not to talk when I’m drinking or eating, because I once spoke while eating and a tiny piece of ground pepper corn caught the back of my throat and sparked and episode. When it does happen I have to try and stay calm (while I’m panicking inside and shouting out to God in my head, to help me) Rescue remedy helps, so I keep a bottle in the fridge and a bottle in my handbag, just in case. It helps to calm me down. I need to remember to ‘breath’ in through my nose, not my mouth and that’s not easy when you are panicking; (and almost impossible if you have a tickle in your throat, or your nose is blocked because of a cold). This is horrible when it happens, and yes it does still happen to me on rare occasions, when I’m very tired, or stressed, or when my vocal cords seem to want to give up, all because of tiredness.
I have recently been told that what I have just described above is called a ‘Laryngospasm’ or also known as ‘dry drowning’ and the terrifying noise I heard myself make is called a ‘stridor’. This is all very scary when it happens, but it does pass. I will explain how I found this all out as an update for you in my next book. But I understand now why this happens, it's a warning for me to rest and be kind to myself. I like those words, be kind to myself. If we were all a little bit kinder to ourselves, we would all feel so much better. So let’s all, be kind to ourselves.