In sickness and in health
As two nice people made references to my health in the comments on the last blog I thought I'd better bring new readers up to speed.
It is hard to believe that I'd be able to actively participate in an office move when only a couple of months before I was banged up in hospital seemingly on my last legs.
My symptoms were strange and alarming. It was all so very quick!
First my mouth went a bit numb - like I'd drunk tea that was too hot. A few says later I couldn't speak properly - I sounded like I was deaf. I was very nasal and there were some sounds I could no longer form. I couldn't whistle.
If I drank quickly it came out of my nose.
My vision became so badly double that there was a foot between the images.
I became very weak and easily fatigued.
My breathing was the bit that frightened me, my ribcage went rigid and patches of me were becoming numb.
Random bits of me seemed to be shutting down and I was terrified that the next bit to go would be something essential - like the bits of my brain that made me 'me'.
I felt I had to contemplate my life without me being active in it. No one knew why this was happening and that meant no one at that time knew how to stop it.
Having a six year old son probably made me fast forward through much of the self pity and focus on planning for him. It was desperately upsetting imagining him growing up without a mum. I also put plans together for Dogs Today to continue, where the dogs would end up - I am one of those people that has to sort out a mess and in the middle of the night I was making plans, assuming that in the morning I was going into hospital and I might not come out again.
Trying to give my son a last hug without showing I was upset was hard.
The doctors started narrowing the possibilities, but the conditions they bandied about were all still horrible. I had every test - MRI, Ct scan you name it.
Then one day in hospital, I just started getting better spontaneously.
There had been three things that broadly fitted my symptoms. Myasthenia Gravis (MG) a rare and incurable autoimmune disease that is rarely fatal but can leave you like a rag doll; a strain of Motor Neuron which is rare and incurable and usually fatal within 3 months to 2 years and an encounter with botulism, the most deadly substance on the planet.
MG was considered the most likely. And I was put on the grotty drugs while all the tests were done to confirm it. It's hard to diagnose, and it took ages. I experimented with coming off the drugs and felt better. I never got a positive MG test, but some people just don't. The neurologist said MG had been his main hunch - when I got better he was left scratching his head.
The Motor Neuron - Bulbar Palsy - would have been rapidly progressive. So getting better didn't fit with that one. Plus I had ocular symptoms that didn't really fit, either.
I was, however, I thought a perfect fit for botulism - a mild dose with relatively slow onset symptoms is much more survivable than you'd imagine. But I guess the only cases that make the headlines are the ones that kill loads of people.
But, I was to discover, retrospective tests for botulism aren't possible.
Being an excellent googler and close watcher of TV progs like CSI, ER, Greys Anatomy etc I did mention botulism was a possible to consider as I was being assessed in A&E. But it was dismissed at the time by a Dr who had misremembered the incubation period.
In his defence, he'd probably not read up botulism since he was at medical school. But statisitically botulism wasn't any rarer than MG or Motor Neuron - so perhaps he should have investigated my hunch. The text books say to treat anyone who has the symptoms - not to wait for the tests to come back. And no one can deny - I had all the symptoms.
I suspect that any hospital ever saying, "well you were probably right after all - good job you didn't die - perhaps we should have given you the antitoxin," is a highly unlikely scenario!
(I do have a surprising track record in diagnositics. I spotted my mother had a very rare condition when she had some odd symptoms, which stunned her specialist who agreed with me 100%, so I must be quite good at looking stuff up. Sadly had my mother's GP been as good as me with the search engines, my Mum might still be alive today as sadly I was too late with my diagnosis for her to be treated. Mum had SVC syndrome, one of the only true cancer emergencies.)
It is my belief that many more people in this country have probably died of botulism than we know about.
In New York, when one person was diagnosed with botulism it was traced back to a home-made salad dressing served in a small restaurant. They had made a dressing out of oil and garlic and sealed the bottle but not kept it in the fridge.
Four more victims who had all eaten the same salad at that restaurant were traced, all had been incorrectly diagnosed with either MG (like me) or strokes (my slurred speech could easily have led people to assume I'd had a bleed).
If only one in five of those people initially got a correct botulism diagnosis - how many other people are missed before a cluster is spotted?
All of those people survived long enough to outlive the initial wrong diagnosis - but as the symptoms of botulism can often be very rapid and deadly - if you stopped breathing, I wonder how many autopsies would spot the underlying cause of the respiratory failure was botulism?
I doubt it is something that is ever routinely screened for. You have to give a sample of the suspect substance to a rat or mouse and wait and see what happens - there appears to be no simple quick test - even on something as high-tec as CSI!
How many home-made salad dressings are incorrectly stored? And how many people reheat jacket potatoes wrapped in silver foil - a perfect botulism factory would you believe!
Prior to all this, I never knew you could get botulism from anything other than canned goods - and worryingly - neither did the A&E doctors I encountered!
So - it seems I either got better spontaneously from a brush with the most deadly substance on the planet - or there's just been some sort of miracle that's happened and I've got better from something you don't normally recover from.
My neurologist speculated if this all could just have been the most enormous stress reaction - as I had been under so much pressure - what with the Wag and Bone Show fiasco, our first flood etc etc! But he was struggling to see how I developed the nasal regurgitation aspect - he said that was just too weird!
But the fact I seemed to have coped with the recent stress of this latest flood without the same dramatic negative effect on my health kind of rules the stress theory out, too! And besides, I work in magazines - stress is part of the job description.
Either way, I'm just very, very happy to be alive and able to move heavy boxes!
My next blog will be about Prince and his owner. I had intended it to be this one, but I got sidetracked!
If anyone else out there was provisionally diagnosed with MG - but then got better - please do get in touch. I would love to discover if we do have a botulism cluster. What freaks me out is the possibility that one of the restaurants I still visit is serving up a Caesar salad with something deadly on the side.
It is hard to believe that I'd be able to actively participate in an office move when only a couple of months before I was banged up in hospital seemingly on my last legs.
My symptoms were strange and alarming. It was all so very quick!
First my mouth went a bit numb - like I'd drunk tea that was too hot. A few says later I couldn't speak properly - I sounded like I was deaf. I was very nasal and there were some sounds I could no longer form. I couldn't whistle.
If I drank quickly it came out of my nose.
My vision became so badly double that there was a foot between the images.
I became very weak and easily fatigued.
My breathing was the bit that frightened me, my ribcage went rigid and patches of me were becoming numb.
Random bits of me seemed to be shutting down and I was terrified that the next bit to go would be something essential - like the bits of my brain that made me 'me'.
I felt I had to contemplate my life without me being active in it. No one knew why this was happening and that meant no one at that time knew how to stop it.
Having a six year old son probably made me fast forward through much of the self pity and focus on planning for him. It was desperately upsetting imagining him growing up without a mum. I also put plans together for Dogs Today to continue, where the dogs would end up - I am one of those people that has to sort out a mess and in the middle of the night I was making plans, assuming that in the morning I was going into hospital and I might not come out again.
Trying to give my son a last hug without showing I was upset was hard.
The doctors started narrowing the possibilities, but the conditions they bandied about were all still horrible. I had every test - MRI, Ct scan you name it.
Then one day in hospital, I just started getting better spontaneously.
There had been three things that broadly fitted my symptoms. Myasthenia Gravis (MG) a rare and incurable autoimmune disease that is rarely fatal but can leave you like a rag doll; a strain of Motor Neuron which is rare and incurable and usually fatal within 3 months to 2 years and an encounter with botulism, the most deadly substance on the planet.
MG was considered the most likely. And I was put on the grotty drugs while all the tests were done to confirm it. It's hard to diagnose, and it took ages. I experimented with coming off the drugs and felt better. I never got a positive MG test, but some people just don't. The neurologist said MG had been his main hunch - when I got better he was left scratching his head.
The Motor Neuron - Bulbar Palsy - would have been rapidly progressive. So getting better didn't fit with that one. Plus I had ocular symptoms that didn't really fit, either.
I was, however, I thought a perfect fit for botulism - a mild dose with relatively slow onset symptoms is much more survivable than you'd imagine. But I guess the only cases that make the headlines are the ones that kill loads of people.
But, I was to discover, retrospective tests for botulism aren't possible.
Being an excellent googler and close watcher of TV progs like CSI, ER, Greys Anatomy etc I did mention botulism was a possible to consider as I was being assessed in A&E. But it was dismissed at the time by a Dr who had misremembered the incubation period.
In his defence, he'd probably not read up botulism since he was at medical school. But statisitically botulism wasn't any rarer than MG or Motor Neuron - so perhaps he should have investigated my hunch. The text books say to treat anyone who has the symptoms - not to wait for the tests to come back. And no one can deny - I had all the symptoms.
I suspect that any hospital ever saying, "well you were probably right after all - good job you didn't die - perhaps we should have given you the antitoxin," is a highly unlikely scenario!
(I do have a surprising track record in diagnositics. I spotted my mother had a very rare condition when she had some odd symptoms, which stunned her specialist who agreed with me 100%, so I must be quite good at looking stuff up. Sadly had my mother's GP been as good as me with the search engines, my Mum might still be alive today as sadly I was too late with my diagnosis for her to be treated. Mum had SVC syndrome, one of the only true cancer emergencies.)
It is my belief that many more people in this country have probably died of botulism than we know about.
In New York, when one person was diagnosed with botulism it was traced back to a home-made salad dressing served in a small restaurant. They had made a dressing out of oil and garlic and sealed the bottle but not kept it in the fridge.
Four more victims who had all eaten the same salad at that restaurant were traced, all had been incorrectly diagnosed with either MG (like me) or strokes (my slurred speech could easily have led people to assume I'd had a bleed).
If only one in five of those people initially got a correct botulism diagnosis - how many other people are missed before a cluster is spotted?
All of those people survived long enough to outlive the initial wrong diagnosis - but as the symptoms of botulism can often be very rapid and deadly - if you stopped breathing, I wonder how many autopsies would spot the underlying cause of the respiratory failure was botulism?
I doubt it is something that is ever routinely screened for. You have to give a sample of the suspect substance to a rat or mouse and wait and see what happens - there appears to be no simple quick test - even on something as high-tec as CSI!
How many home-made salad dressings are incorrectly stored? And how many people reheat jacket potatoes wrapped in silver foil - a perfect botulism factory would you believe!
Prior to all this, I never knew you could get botulism from anything other than canned goods - and worryingly - neither did the A&E doctors I encountered!
So - it seems I either got better spontaneously from a brush with the most deadly substance on the planet - or there's just been some sort of miracle that's happened and I've got better from something you don't normally recover from.
My neurologist speculated if this all could just have been the most enormous stress reaction - as I had been under so much pressure - what with the Wag and Bone Show fiasco, our first flood etc etc! But he was struggling to see how I developed the nasal regurgitation aspect - he said that was just too weird!
But the fact I seemed to have coped with the recent stress of this latest flood without the same dramatic negative effect on my health kind of rules the stress theory out, too! And besides, I work in magazines - stress is part of the job description.
Either way, I'm just very, very happy to be alive and able to move heavy boxes!
My next blog will be about Prince and his owner. I had intended it to be this one, but I got sidetracked!
If anyone else out there was provisionally diagnosed with MG - but then got better - please do get in touch. I would love to discover if we do have a botulism cluster. What freaks me out is the possibility that one of the restaurants I still visit is serving up a Caesar salad with something deadly on the side.
Comments
Looking forward to the next post :D
See ya on D For Dog
Em
You seem to be too busy telling us about other people's problems to talk about your own.
Thank goodness you're better.