Wahay! I am off to see an orthoptist tomorrow to talk doublevision.
Doublevision and eye movement problems in general have been my one constant since I had my last major relapse in 2008. My MS history is littered with symptoms and side effects that have come and gone or have fluctuated with other external factors such as stress, medication, temperature, exercise or pure bad luck. Doublevision has remained constant since the spring of 2008.
Just like the MS in general, it is a companion but not a friend. It is the doublevision that reminds me I have MS when the other symptoms are lying low for a bit. I also think I have the doublevision to thank for the diagnosis - if I didn't have it in the first place, I may not have made the fateful GP appointment. I would have probably lived with the tingling fingers, the fatigue, the occasional vertigo, even the pain for a bit longer before seeking medical advice.
Doublevision affects me only when I look left. From a single image looking straight ahead, two side-by-side images appear the instant I start looking left and the displacement increases the further I go. When I first discovered I had it, I tested it every breakfast-time by gradually looking left at two chimneys on the next street. These chimneys would eventually match up becoming one chimney with two TV aerials. It never got any worse, it never got any better. One and a half years on, it is still the same.
People ask me how I manage to drive with it. The answer is, I close one eye when looking left. Simple as that.
I find that I am constantly screwing up one eye in everyday situations, though, or I would have difficulty recognising people in the distance, crossing the road, participating in meetings and so on.
When I go out for a drink (I honestly don't drink very much), I makes me feel drunk/ill way before I should do.
It doesn't normally bother me. It's constancy means I have learned to live with it. But it does tire me out and this has an impact on my mood and fatigue levels.
There are two possible solutions. One is to wear an eye patch. The other one is to wear glasses with prism lenses. I have no idea what these spectacles look like, so I have the fear of becoming the kid with the sticking plaster holding together a pair of national health specs. But then again I don't fancy becoming Long John Silver either, therefore I have the orthoptist appointment tomorrow. It has been a long time coming and should hopefully have a positive impact on my quality of life.
A further appointment with an opthalmologist is scheduled for later this month.
Showing posts with label pain. Show all posts
Showing posts with label pain. Show all posts
Monday, 7 December 2009
Tuesday, 1 December 2009
Unlike father unlike son
My Mum used to say that my Dad (a former cross-country runner) would often wake her up in the middle of the night by running in his sleep. His legs and feet going like the clappers. When woken and asked to explain he would mumble something about running across the fields and ditches of his native East Anglia.
I used to think that was quite sweet, and in the same way as my pet cat flying off to chase mice in the sky, I often hope that the afterlife for my Dad might include a few lengthy runs particularly as he isn't as mobile as he used to be.
I was woken up last night. Even though I have been taking my amitriptyline pills for neuropathic pain, my legs and feet decided to ignore them and they kept me awake for a long time in the early hours.
It's hard to describe how neuropathic pain feels, and it's different for different people. Sometimes they feel as if my legs are made of sponge and they are gradually being wrung out. Sometimes it feels as though they want to curl and shrivel up like a burning match. Sometimes it feels as though a large concrete slab is being placed on them imperceptably slowly by just a micron or two every minute or so.
Last night it felt like they just wanted to detach themselves and run away, running to catch up with my Dad on his ploughed field.
I used to think that was quite sweet, and in the same way as my pet cat flying off to chase mice in the sky, I often hope that the afterlife for my Dad might include a few lengthy runs particularly as he isn't as mobile as he used to be.
I was woken up last night. Even though I have been taking my amitriptyline pills for neuropathic pain, my legs and feet decided to ignore them and they kept me awake for a long time in the early hours.
It's hard to describe how neuropathic pain feels, and it's different for different people. Sometimes they feel as if my legs are made of sponge and they are gradually being wrung out. Sometimes it feels as though they want to curl and shrivel up like a burning match. Sometimes it feels as though a large concrete slab is being placed on them imperceptably slowly by just a micron or two every minute or so.
Last night it felt like they just wanted to detach themselves and run away, running to catch up with my Dad on his ploughed field.
Monday, 3 August 2009
pain
Currently experiencing a lot of neuropathic pain in my feet and legs. It can't be due to forgetting the tablets too often as I have remembered to take them the last few days.
I am going to continue to take them at the current level for this week and if no better, I'm upping the dose.
Walking about relieves it a little, but the pain always seems to catch up.
I am going to continue to take them at the current level for this week and if no better, I'm upping the dose.
Walking about relieves it a little, but the pain always seems to catch up.
Monday, 13 July 2009
How deep is remission?
Someone once said to me "MS is a companion, but not a friend."
These words ring true. I have been in remission for a while now, but I still haven't shaken most of the symptoms. The dizziness and fatigue have been pushed into the background but they grumble along, just to let me know they are still lurking away.
The tingling fingers and leg pain are still there as well, but there will be a gap of five minutes or so every now and then when my hands feel "normal", and the crushing and squeezing in my feet and calves won't start until later in the evening.
The double-vision is ever-present and consistent though, so it is this that I use, just to pinch myself that this is really happening to me. Let's just look left for a second, I tell myself... yes, two plant-pots instead of one.
Being told you have MS is so surreal that when symptoms are on a back burner and I feel good about myself, I feel the need for a reality check.
You may ask why. Why not just enjoy the moment? I think the answer is that if all my symptoms disappeared completely, I would forever be paranoid that there was a big attack just around the corner, waiting to take me by surprise. Checking that everything is still going wrong in it's usual way, ensures that I get some constancy and I have something that I have the illusion of keeping in check.
Then of course, there are the times when I forget to take my tablets for a few days and it feels like I'm holding a cactus anyway.
This weekend was a mad one: jobs to do, daughters to amuse etc. On top of all this the weather was warm and muggy and I came down with a head cold which screwed me up for long stretches of the day. There were a couple of times when I simply couldn't stand up. And as I type this, I am battling with drooping eyelids and a brain determined to shut itself down.
I guess there is no easy way to guage where remission begins and relapse ends as everything is there still - making it's presence felt. The terrorist cell that operates in my central nervous system is currently doing a woollens wash, with their balaclavas probably just starting the spin cycle.
The next move they make could be tomorrow or it could be in twenty years time.
Whenever it happens, I like to think that I will be ready psychologically.
These words ring true. I have been in remission for a while now, but I still haven't shaken most of the symptoms. The dizziness and fatigue have been pushed into the background but they grumble along, just to let me know they are still lurking away.
The tingling fingers and leg pain are still there as well, but there will be a gap of five minutes or so every now and then when my hands feel "normal", and the crushing and squeezing in my feet and calves won't start until later in the evening.
The double-vision is ever-present and consistent though, so it is this that I use, just to pinch myself that this is really happening to me. Let's just look left for a second, I tell myself... yes, two plant-pots instead of one.
Being told you have MS is so surreal that when symptoms are on a back burner and I feel good about myself, I feel the need for a reality check.
You may ask why. Why not just enjoy the moment? I think the answer is that if all my symptoms disappeared completely, I would forever be paranoid that there was a big attack just around the corner, waiting to take me by surprise. Checking that everything is still going wrong in it's usual way, ensures that I get some constancy and I have something that I have the illusion of keeping in check.
Then of course, there are the times when I forget to take my tablets for a few days and it feels like I'm holding a cactus anyway.
This weekend was a mad one: jobs to do, daughters to amuse etc. On top of all this the weather was warm and muggy and I came down with a head cold which screwed me up for long stretches of the day. There were a couple of times when I simply couldn't stand up. And as I type this, I am battling with drooping eyelids and a brain determined to shut itself down.
I guess there is no easy way to guage where remission begins and relapse ends as everything is there still - making it's presence felt. The terrorist cell that operates in my central nervous system is currently doing a woollens wash, with their balaclavas probably just starting the spin cycle.
The next move they make could be tomorrow or it could be in twenty years time.
Whenever it happens, I like to think that I will be ready psychologically.
Thursday, 18 June 2009
One year on ...
Today is the first anniversary of my diagnosis (see MS History - part two).
Health professional bodycount so far.
Starting with the first GP visit last year, the bodycount is as follows
Symptom recap:
Current symptoms:
Health professional bodycount so far.
Starting with the first GP visit last year, the bodycount is as follows
- GPs 4
- Practice Nurses 2
- MS nurse 1
- Ward nurse 1
- Occupational Health nurse 1
- Phlebotomists 6 (estimate)
- Physiotherapists 1
- Neurologists 5
- Neuro-psychologists 2
- Radiologists 4
Symptom recap:
Current symptoms:
- mild optic neuritis (since Jan '09)
- doublevision / nystagmus / intra-nuclear opthalmoplegia / oscillopsia
- fatigue
- tingling / pins and needles
- neuropathic pain in legs
Symtoms that have cleared up for now:
- L'Hermitte's sign
- vertigo
- muscle weakness
- involuntary muscle movement
Wednesday, 20 May 2009
weirdness
been quite stable for ages - just the come and go of pain and fatigue.
Today, I feel a bit weird.
It feels as if the side of my head is undulating and my right leg feels a bit weak - definitely something up, will monitor. May go away in a bit. Come to think of it - this morning my foot felt ice cold.
Hmmmm.....
Today, I feel a bit weird.
It feels as if the side of my head is undulating and my right leg feels a bit weak - definitely something up, will monitor. May go away in a bit. Come to think of it - this morning my foot felt ice cold.
Hmmmm.....
Tuesday, 5 May 2009
Sod's law.
The last thing I did online last night was post on this blog about how good I was feeling after my run. As I turned the computer off I felt slightly nauseous, decided I wasn't up to ironing my work shirt for the morning and stumbled off to bed. Between bathroom and bedroom I developed the most extreme chill. I spent the next hour or two shivering uncontrollably and my joints ached like crazy.
I had injected with Rebif about an hour before onset, so this must have been the side-effects. I have been injecting with Rebif for five months now and have only experienced mild reactions so far. Most of the material I have read states that side-effects are worse in the first three months before tailing off, but I guess this shows they can flare up at any time.
Feel like I could fall asleep at any moment.
I had injected with Rebif about an hour before onset, so this must have been the side-effects. I have been injecting with Rebif for five months now and have only experienced mild reactions so far. Most of the material I have read states that side-effects are worse in the first three months before tailing off, but I guess this shows they can flare up at any time.
Feel like I could fall asleep at any moment.
Friday, 24 April 2009
Drug experiments
It's official, I have been told by my GP that I can experiment with drugs.
Well, actually, no. I have been given the go ahead to increase the dosage of the amitriptyline to try and weigh up the pros of pain relief and the cons of the drowsy side-effects.
The side-effects are something I have yet to experience, or if I have, they have become lost in my general background dopeyness.
The pros are that the pain I had been experiencing seems to have abated slightly - occuring later or only if I have had a strenuous day. Not a daily occurence like before. And if I forget to take my tablets for a day or two (like the night before last) I start to get a bit fuzzier round the edges, the shooting pain will start in my fingertips and the squeezing sensation will start in my calves.
Starting last night, I doubled the dosage.
The difficulty is - if it seems to work, is it the drugs doing the work, or is it the crazy unpredictable roller-coaster of MS giving me some time off before it turns on me with a snarl?
It is around this time of year that I have experienced my most debilitating relapses. Hopefully this year, the terrorist cell lurking in my body will notice the beta interferon in my system and decide it isn't worth the bother. This year, I will also be on the look-out, so I should be able to get some treatment when I need it.
Well, actually, no. I have been given the go ahead to increase the dosage of the amitriptyline to try and weigh up the pros of pain relief and the cons of the drowsy side-effects.
The side-effects are something I have yet to experience, or if I have, they have become lost in my general background dopeyness.
The pros are that the pain I had been experiencing seems to have abated slightly - occuring later or only if I have had a strenuous day. Not a daily occurence like before. And if I forget to take my tablets for a day or two (like the night before last) I start to get a bit fuzzier round the edges, the shooting pain will start in my fingertips and the squeezing sensation will start in my calves.
Starting last night, I doubled the dosage.
The difficulty is - if it seems to work, is it the drugs doing the work, or is it the crazy unpredictable roller-coaster of MS giving me some time off before it turns on me with a snarl?
It is around this time of year that I have experienced my most debilitating relapses. Hopefully this year, the terrorist cell lurking in my body will notice the beta interferon in my system and decide it isn't worth the bother. This year, I will also be on the look-out, so I should be able to get some treatment when I need it.
Monday, 23 March 2009
I'm in pain...
It's not pain as you would conventionally know it and it's really difficult to describe the sensation. My feet and lower legs feel like they want to shrivel up and shrink into themselves with occasional stabs of more conventional pain from my toes. I used to describe it as a crawling sensation, but that doesn't do it justice, it is more like my calves and feet are sponges that
someone is gradually wringing out.
I have had this a while, probably a couple of years and the pain is there all the time. It normally causes what I would term chronic discomfort. In the last seven days, however, it has been flaring up regularly into toe-curling proportions. It will gradually get worse for a few hours later in the day. It can start at lunchtime or in the evening and progresses to become really debilitating. The only thing that provides relief is if I get up and walk around and I often imagine that my legs want to break away and run off by themselves. I guess it also gets worse the hotter or more fatigued I get.
Conventional painkillers - ibuprofen, paracetamol etc - are no good. I'm not keen on taking any new drugs after the experience I had with Gabapentin, so I'm going to see my GP in the morning if there is anything I can do or take for any relief.
This was written while screwing my face into contortions. Apologies if it's rubbish.
someone is gradually wringing out.
I have had this a while, probably a couple of years and the pain is there all the time. It normally causes what I would term chronic discomfort. In the last seven days, however, it has been flaring up regularly into toe-curling proportions. It will gradually get worse for a few hours later in the day. It can start at lunchtime or in the evening and progresses to become really debilitating. The only thing that provides relief is if I get up and walk around and I often imagine that my legs want to break away and run off by themselves. I guess it also gets worse the hotter or more fatigued I get.
Conventional painkillers - ibuprofen, paracetamol etc - are no good. I'm not keen on taking any new drugs after the experience I had with Gabapentin, so I'm going to see my GP in the morning if there is anything I can do or take for any relief.
This was written while screwing my face into contortions. Apologies if it's rubbish.
Thursday, 15 January 2009
Relapse spotting
Well, I guess this goes to show how difficult it can be to spot a relapse, sometimes.
I spoke to H (my nurse) today about the optic neuritis and heavy legs that I have been experiencing over the last few days. She thought the optic neuritis sounded like I was experiencing a small relapse, but the heavy legs and the 'cactus gloves' I am wearing may be related to coming off Gabapentin.
I am to "take it easy and see how I get on"
I thought I would make a list of things that had flared up over the last month or so:
I spoke to H (my nurse) today about the optic neuritis and heavy legs that I have been experiencing over the last few days. She thought the optic neuritis sounded like I was experiencing a small relapse, but the heavy legs and the 'cactus gloves' I am wearing may be related to coming off Gabapentin.
I am to "take it easy and see how I get on"
I thought I would make a list of things that had flared up over the last month or so:
- optic neuritis - lights in my vision (currently) and pain when moving my eyes (last Friday to Sunday)
- stiff heavy legs - currently finding it difficult to walk (up hills especially)
- foot switching itself on and off repeatedly - hot then normal then hot etc. (before Christmas)
- the same foot going excessively cold
- occasional tinnitus - right ear (since early December)
- dizziness - no vertigo head rush, yet, but I lost my balance a couple of times today and either bumped into things or nearly fell over
- my head has gone tingly a couple of times
- I felt very lethargic on a number of occasions since the New Year, but nothing I would class as chronic fatigue
- an increase in the amount of insects who seem to want to escape from my feet
I can go to hospital to be checked over and prescribed more steroids if I need them. I don't really want to do that, though. H also advised that I take some time off if I feel any more crap than I do now, and I don't really see that happening either.
Strangely, as I typed this, I experienced a tightness across my chest that may or may not be the "MS hug."
Sunday, 11 January 2009
Relapse??
I'm a bit worried I might be starting to relapse again. My optic neuritis seems to have returned in my left eye - I have been having speckled lights in my vision and pain when looking round. So far, only one large white phosphene. The other day my head went tingly as I drove home from work and I've had the hot cold feet and quite a severe flare up of leg pain (the ants / woodlice trying to get out).
If it's still a concern on Monday, I will phone my nurse and ask her advice, though the optic neuritis doesn't (so far) seem as bad as 2004.
If it's still a concern on Monday, I will phone my nurse and ask her advice, though the optic neuritis doesn't (so far) seem as bad as 2004.
Monday, 5 January 2009
So long Gabapentin!
With the backing of my GP, I have ditched Gabapentin.
It has been making me feel crap for a while, now. The main side effects being fatigue and hallucinations. I was starting to fall asleep by 7pm every day. As an experiment, I tried a couple of days over Christmas without taking the pills and I instantly felt better. I took my last pill three days ago and my wife has since remarked that I look a lot better and I am chirpier in the mornings.
It seems to me that while G didn't rid me of symptoms completely, it must have had some dampening effect. My hands, feet and leg feel three times as bad as they did a week ago, and my calves and feet were excruciatingly crawly last night but - you know what? I'd rather have that than the side-effects.
Now I can be more in tune with how my body is feeling, particularly as a lot of G's side-effects mirror (and mask) general MS symptoms anyway.
It has been making me feel crap for a while, now. The main side effects being fatigue and hallucinations. I was starting to fall asleep by 7pm every day. As an experiment, I tried a couple of days over Christmas without taking the pills and I instantly felt better. I took my last pill three days ago and my wife has since remarked that I look a lot better and I am chirpier in the mornings.
It seems to me that while G didn't rid me of symptoms completely, it must have had some dampening effect. My hands, feet and leg feel three times as bad as they did a week ago, and my calves and feet were excruciatingly crawly last night but - you know what? I'd rather have that than the side-effects.
Now I can be more in tune with how my body is feeling, particularly as a lot of G's side-effects mirror (and mask) general MS symptoms anyway.
Tuesday, 23 December 2008
The morning after... groan!
I felt very rough this morning. All my joints ached and I even felt a bit nauseous. I injected at 10.40ish last night. I woke at around 2am to see to one of my children when I felt groggy with sleep but fine otherwise. I finally woke up at 6.30 this morning and felt as though I had been hit by a truck. I guess this is the flu like symptoms. I also noticed I was sensitive to different temperatures. My daughter's cold hands and the too hot shower water both sent my nerves screaming.
Luckily I had a blood test this morning, so I didn't have to go to work so early and was able to go back to bed for 15 minutes after breakfast.
My blood made a nice squirty noise as it filled one of the test tubes. Both the nurse and I smiled. She said she'd had an 'interesting' morning collecting blood from the mental health wards saying she was always a little worried in this situation - that there might be gruesome noises to freak the patients out.
A combination of ibuprofen and paracetamol are helping me ride it out. My next injection is due on Christmas Eve, but I might delay this by a day - I don't want to be ill on Christmas morning.
Luckily I had a blood test this morning, so I didn't have to go to work so early and was able to go back to bed for 15 minutes after breakfast.
My blood made a nice squirty noise as it filled one of the test tubes. Both the nurse and I smiled. She said she'd had an 'interesting' morning collecting blood from the mental health wards saying she was always a little worried in this situation - that there might be gruesome noises to freak the patients out.
A combination of ibuprofen and paracetamol are helping me ride it out. My next injection is due on Christmas Eve, but I might delay this by a day - I don't want to be ill on Christmas morning.
Thursday, 18 December 2008
Weird new symptom alert - update
The on-and-off hot foot sensation from the other day has now been replaced with an ice cold foot. For most of my drive in to work this morning my right foot felt as if I had been kicking snow around with inadequate footwear on.
I worry about my right foot and leg. I often think that in the unlikely event that I "lose" a leg - it's going to be the right one. Bang go my childhood dreams of playing on the wing for Man City.
I know I have at least three large patches of myelin damage in my spinal cord - the one that causes L'hermitte's must have been subdued somewhat but seeing as I'm having bad pins and needles in both hands at the moment and a seriously fuzzy leg I'm wondering if the increased dose of Rebif (beta interferon) is having this effect. Another increase in dose next week - oh joy!
I worry about my right foot and leg. I often think that in the unlikely event that I "lose" a leg - it's going to be the right one. Bang go my childhood dreams of playing on the wing for Man City.
I know I have at least three large patches of myelin damage in my spinal cord - the one that causes L'hermitte's must have been subdued somewhat but seeing as I'm having bad pins and needles in both hands at the moment and a seriously fuzzy leg I'm wondering if the increased dose of Rebif (beta interferon) is having this effect. Another increase in dose next week - oh joy!
Wednesday, 17 December 2008
Life with MS - Part One - Symptoms
I don't want to come over all "woe is me" because there are plenty of people out there on the internet trying to out-do each other with their bad symptoms and there are many others with MS who have it much worse than I do (my old neighbour who also has MS, doesn't recognise me now when I see her).
I thought for the purposes of this blog that it might be useful to document some of the symptoms I have experienced both now and in the past to give readers some idea of what it is like to have MS. Please note: this list does not include the marvellous array of drug side-effects. More on those later.
Symptoms happening now:
Doublevision (since March 2008)
when I look left I see two of everything side by side. Simple as that. The more I look left, the bigger the displacement between images. Makes crossing the road and recognising people in the street difficult. Constantly closing one eye takes it's toll too, in terms of fatigue and people thinking you are crazy.
Nystagmus (since summer 2008)
When I look right, I get nystagmus. My eyes flicker and won't keep still. It gets worse if I'm tired or have done some exercise and I can sometimes get jumpy eyes looking straight ahead. It makes reading and watching telly very tiring and I don't read as much these days.
Intranuclear Opthalmoplegia (since March 2008)
Looking left to right or right to left my eyes travel at slightly different speeds so it takes time for the two images to match up when looking right. Things can look a bit trippy when glancing round all over the place.
Oscillopsia (since 2007 or earlier)
my vision jumps around all over the place if I am running or walking strenuously - a bit like running with a video camera.
Pins and needles (intermittent until March 2008 and constant since then)
I get tingling sensations in my fingertips constantly. Sometimes it subsides to a faint tingle. Once or twice I have had a window of half an hour or so when they have disappeared completely (the drugs working). Mostly I get the electric tingling sensation in my fingers only, but it can spread to my hands and even my forearms. I also get these sensations in my feet, particularly my right foot. My right leg feels fuzzy for most of the time and walking can be troublesome on a bad day. I have numb patches on my right foot. This all gets worse if hot or tired. Also according to a 2004 diary entry - I had a week where half my head had pins and needles.
Bladder problems (not sure since when)
I sometimes find it hard to go. I don't always fully empty my bladder - I simply can't - and I can need to go to the loo several times during the night giving me a disturbed night's sleep.
Cognitive Problems (not sure since when)
I have difficulty with concentration and short term memory - a particular problem with routine tasks, such as making payments to the child-minder, credit cards etc. My mind can wander in the middle of conversations as well and I lose the thread of.... erm... ...anyway I have an old pre-diagnosis diary entry where I thought my memory and concentration had improved since taking Omega 3 tablets, but I was probably documenting a remission period.
Pain (not sure since when)
Apart from the pins and needles, I get sharp shooting pains from my finger tips occasionally. The worst pain I get is a weird cramping sensation in my legs which feels like insects (ants in my imagination) moving around under the skin. This is unbelievably uncomfortable and when it happens I can't keep still and I can't relax. This happens almost daily and can start as early as mid-day.
Fatigue (since March 2008, but also during hot days in 2007)
Like someone has taken my battery out. I had this at work once and found my mind blank as if I was sleeping with my eyes open. It happens intermittently and when it does I might as well be made of concrete. I will just want to sleeeep.
Other symptoms:
Stiffness / Muscle spasm (Spring 2008)
I had a problem with this in the spring of 2008. I was an old man for three days - stiff as a board. I found it very difficult to move. It coincided with having hives - I think I had an allergy to some washing powder which brought this on. I also had involuntary movement of my calf muscles in March 2008 - in a relaxed state they were moving and twitching all over the place.
Optic neuritis (March/April 2004)
Flickering lights in my vision. Some pain in my eyes when looking round. Flashes of milky white light in my vision when looking round in the dark.
Headaches (July 2004)
I reported in my diary of the time that I had a headache that had lasted for four weeks. Of course, I could have had any number of MS induced headaches, but when one lasts for four weeks, it's a dead cert.
L'hermitte's sign (March 2008 to Autumn 2008)
Placing my chin on my chest created an electric shock sensation travelling down my back and into my thighs, or, on a good day, like someone pulling a tickly, twiggy branch up my back. I think drug therapy may have cleared this one up for now.
Vertigo (2004 to 2008)
An intermittent symptom - it comes and goes. I felt a mild wave of giddiness the other day when I was bending down for something, but at it's worst vertigo can make the whole world spin and induce a feeling of seasickness. Even turning over in bed can make me lose my balance completely and I have to sit up to regain my bearings. In 2004 and 2007, this was one of the major symptoms I had to deal with and I spent a night of hell intermittently spinning and vomiting in 2007. I also used to walk into the walls along the long corridors at work. It's very unpleasant - I would rather have doublevision over this any day.
Ultra-sensitivity (pre-2007 to 2008)
I have patches of skin that can be ultra-sensitive and uncomfortably ticklish.
So there you go. Quite a wide range of stuff, sensory and visual mainly.
I guess since diagnosis I am more aware of everything that is going on, so I may have missed out a whole heap of weirdness that has come and gone over the last few years. Now I am on beta interferon, the length of time between relapses should lengthen, but I should be able to recognise when one starts when new symptoms start appearing or old ones start re-appearing and I will document it here.
I thought for the purposes of this blog that it might be useful to document some of the symptoms I have experienced both now and in the past to give readers some idea of what it is like to have MS. Please note: this list does not include the marvellous array of drug side-effects. More on those later.
Symptoms happening now:
Doublevision (since March 2008)
when I look left I see two of everything side by side. Simple as that. The more I look left, the bigger the displacement between images. Makes crossing the road and recognising people in the street difficult. Constantly closing one eye takes it's toll too, in terms of fatigue and people thinking you are crazy.
Nystagmus (since summer 2008)
When I look right, I get nystagmus. My eyes flicker and won't keep still. It gets worse if I'm tired or have done some exercise and I can sometimes get jumpy eyes looking straight ahead. It makes reading and watching telly very tiring and I don't read as much these days.
Intranuclear Opthalmoplegia (since March 2008)
Looking left to right or right to left my eyes travel at slightly different speeds so it takes time for the two images to match up when looking right. Things can look a bit trippy when glancing round all over the place.
Oscillopsia (since 2007 or earlier)
my vision jumps around all over the place if I am running or walking strenuously - a bit like running with a video camera.
Pins and needles (intermittent until March 2008 and constant since then)
I get tingling sensations in my fingertips constantly. Sometimes it subsides to a faint tingle. Once or twice I have had a window of half an hour or so when they have disappeared completely (the drugs working). Mostly I get the electric tingling sensation in my fingers only, but it can spread to my hands and even my forearms. I also get these sensations in my feet, particularly my right foot. My right leg feels fuzzy for most of the time and walking can be troublesome on a bad day. I have numb patches on my right foot. This all gets worse if hot or tired. Also according to a 2004 diary entry - I had a week where half my head had pins and needles.
Bladder problems (not sure since when)
I sometimes find it hard to go. I don't always fully empty my bladder - I simply can't - and I can need to go to the loo several times during the night giving me a disturbed night's sleep.
Cognitive Problems (not sure since when)
I have difficulty with concentration and short term memory - a particular problem with routine tasks, such as making payments to the child-minder, credit cards etc. My mind can wander in the middle of conversations as well and I lose the thread of.... erm... ...anyway I have an old pre-diagnosis diary entry where I thought my memory and concentration had improved since taking Omega 3 tablets, but I was probably documenting a remission period.
Pain (not sure since when)
Apart from the pins and needles, I get sharp shooting pains from my finger tips occasionally. The worst pain I get is a weird cramping sensation in my legs which feels like insects (ants in my imagination) moving around under the skin. This is unbelievably uncomfortable and when it happens I can't keep still and I can't relax. This happens almost daily and can start as early as mid-day.
Fatigue (since March 2008, but also during hot days in 2007)
Like someone has taken my battery out. I had this at work once and found my mind blank as if I was sleeping with my eyes open. It happens intermittently and when it does I might as well be made of concrete. I will just want to sleeeep.
Other symptoms:
Stiffness / Muscle spasm (Spring 2008)
I had a problem with this in the spring of 2008. I was an old man for three days - stiff as a board. I found it very difficult to move. It coincided with having hives - I think I had an allergy to some washing powder which brought this on. I also had involuntary movement of my calf muscles in March 2008 - in a relaxed state they were moving and twitching all over the place.
Optic neuritis (March/April 2004)
Flickering lights in my vision. Some pain in my eyes when looking round. Flashes of milky white light in my vision when looking round in the dark.
Headaches (July 2004)
I reported in my diary of the time that I had a headache that had lasted for four weeks. Of course, I could have had any number of MS induced headaches, but when one lasts for four weeks, it's a dead cert.
L'hermitte's sign (March 2008 to Autumn 2008)
Placing my chin on my chest created an electric shock sensation travelling down my back and into my thighs, or, on a good day, like someone pulling a tickly, twiggy branch up my back. I think drug therapy may have cleared this one up for now.
Vertigo (2004 to 2008)
An intermittent symptom - it comes and goes. I felt a mild wave of giddiness the other day when I was bending down for something, but at it's worst vertigo can make the whole world spin and induce a feeling of seasickness. Even turning over in bed can make me lose my balance completely and I have to sit up to regain my bearings. In 2004 and 2007, this was one of the major symptoms I had to deal with and I spent a night of hell intermittently spinning and vomiting in 2007. I also used to walk into the walls along the long corridors at work. It's very unpleasant - I would rather have doublevision over this any day.
Ultra-sensitivity (pre-2007 to 2008)
I have patches of skin that can be ultra-sensitive and uncomfortably ticklish.
So there you go. Quite a wide range of stuff, sensory and visual mainly.
I guess since diagnosis I am more aware of everything that is going on, so I may have missed out a whole heap of weirdness that has come and gone over the last few years. Now I am on beta interferon, the length of time between relapses should lengthen, but I should be able to recognise when one starts when new symptoms start appearing or old ones start re-appearing and I will document it here.
Monday, 15 December 2008
Weird new symptom alert!
I was lying in bed on Saturday morning, enjoying a rare lie-in (7.30!) when my right foot suddenly became hot - then it switched itself off again to it's normal temperature. It then switched itself on and off three or four more times instantly turning hot and then normal again until I decided to get up and fix breakfast.
It hasn't done it since, but this is a new one for me and I expect it will probably happen again at some point. The whole thing was very peculiar, but because I know the reasons why this sort of thing happens it doesn't freak me out.
When I first developed MS symptoms, I expected something a lot worse and I noticed every twitch of a muscle, every tingle, every hyper-sensitive patch on my body, but when I was given the label of MS that I could slap on everything I was experiencing, I was more able to cope.
It hasn't done it since, but this is a new one for me and I expect it will probably happen again at some point. The whole thing was very peculiar, but because I know the reasons why this sort of thing happens it doesn't freak me out.
When I first developed MS symptoms, I expected something a lot worse and I noticed every twitch of a muscle, every tingle, every hyper-sensitive patch on my body, but when I was given the label of MS that I could slap on everything I was experiencing, I was more able to cope.
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