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Blindness finally revealed the hidden cause of my fatigue: MS Blindness finally revealed the hidden cause of my fatigue: MS
(about 20 hours later)
It all began when I couldn’t wake up one morning. As a freelance music journalist in the early 1990s, torpor seemed an unavoidable consequence of fun times (too many gigs, too many indulgent late nights). But this was different: I could never wake up, and I slept into the early afternoon for weeks, then months on end. Walking along the street became onerous: I lacked both strength and energy.It all began when I couldn’t wake up one morning. As a freelance music journalist in the early 1990s, torpor seemed an unavoidable consequence of fun times (too many gigs, too many indulgent late nights). But this was different: I could never wake up, and I slept into the early afternoon for weeks, then months on end. Walking along the street became onerous: I lacked both strength and energy.
Related: MS: four in five multiple sclerosis sufferers in UK are misdiagnosedRelated: MS: four in five multiple sclerosis sufferers in UK are misdiagnosed
Eventually, I saw my GP. Blood tests proved I was anaemic. I was prescribed vitamin B complex, but I did not improve. On my return, my GP repeatedly insinuated that I was depressed, saying somewhat oddly: “We like mental health at this surgery.” I refused the antidepressants.Eventually, I saw my GP. Blood tests proved I was anaemic. I was prescribed vitamin B complex, but I did not improve. On my return, my GP repeatedly insinuated that I was depressed, saying somewhat oddly: “We like mental health at this surgery.” I refused the antidepressants.
But this exhaustion was devastating, crushing and life-changing. Finally, I had a major crisis: I woke up blind.But this exhaustion was devastating, crushing and life-changing. Finally, I had a major crisis: I woke up blind.
Rather than return to that doctor, I managed to find my way to the accident and emergency department of the nearby eye hospital. Tactfully, tentatively and apparently reluctantly, they explained that my blindness might (they emphasised the “might”) be multiple sclerosis.Rather than return to that doctor, I managed to find my way to the accident and emergency department of the nearby eye hospital. Tactfully, tentatively and apparently reluctantly, they explained that my blindness might (they emphasised the “might”) be multiple sclerosis.
Today’s report of delays by GPs in diagnosing MS brought back memories: 39% of people with MS wait more than a year for a correct diagnosis, during which time we are often dismissed, accused of malingering, told that we have suffered strokes, or are depressed and anxious.Today’s report of delays by GPs in diagnosing MS brought back memories: 39% of people with MS wait more than a year for a correct diagnosis, during which time we are often dismissed, accused of malingering, told that we have suffered strokes, or are depressed and anxious.
Even in the neurology department at hospital, specialists seemed reticent to name my disease; as if this made it real, or gave it power, somehow. One neurologist said he would bet his life savings on my not having the illness, despite a lumbar puncture confirming the reality of MS.Even in the neurology department at hospital, specialists seemed reticent to name my disease; as if this made it real, or gave it power, somehow. One neurologist said he would bet his life savings on my not having the illness, despite a lumbar puncture confirming the reality of MS.
This is not uncommon. Friends with this potentially terminal condition (which is sadly, still largely untreatable) have waited years to find out the cause of their complex, multiple health problems: numbness, tingling limbs, muscle weakness, pain and indeed, perhaps inevitably, depression. Finally diagnosed, they are able (as the MS Society says) to “put their lives in order”. This is not uncommon. Friends with this condition (which is sadly, still largely untreatable) have waited years to find out the cause of their complex, multiple health problems: numbness, tingling limbs, muscle weakness, pain and indeed, perhaps inevitably, depression. Finally diagnosed, they are able (as the MS Society says) to “put their lives in order”.
When I visited for help, my increasingly rude GP thundered that he had “family members with MS whose symptoms are worse than yours”. During the final visit, he impatiently ordered me to Google my condition.When I visited for help, my increasingly rude GP thundered that he had “family members with MS whose symptoms are worse than yours”. During the final visit, he impatiently ordered me to Google my condition.
Like many people, I assumed there was treatment, or even a cure for MS. There isn’t. After I had broken down in tears, my GP told me to “stop being hysterical”, because his relatives with MS “led productive lives”.Like many people, I assumed there was treatment, or even a cure for MS. There isn’t. After I had broken down in tears, my GP told me to “stop being hysterical”, because his relatives with MS “led productive lives”.
I realise this might be extreme, but many doctors are flummoxed by the symptoms of MS, which is why most patients visit at least four times before discovering what is wrong. Doctors don’t like to be helpless, or appear clueless, even in the face of this devastating illness. MS is unpredictable and affects patients in different ways. Some people die within five years; others only ever notice one numb toe.I realise this might be extreme, but many doctors are flummoxed by the symptoms of MS, which is why most patients visit at least four times before discovering what is wrong. Doctors don’t like to be helpless, or appear clueless, even in the face of this devastating illness. MS is unpredictable and affects patients in different ways. Some people die within five years; others only ever notice one numb toe.
There is no effective treatment – nothing to prescribe, nor really any drugs. The specialist MS nurse at the hospital spoke hopefully of false positive test results. She also advised me to take evening primrose oil, which is costly, of dubious efficacy and not available on prescription. Some sufferers fall prey to quackery. I was sent a link to a “miracle cure” – on a ferry moored in international waters where MS patients are injected with a serum made from the blood of goats exposed to HIV. No, thanks.There is no effective treatment – nothing to prescribe, nor really any drugs. The specialist MS nurse at the hospital spoke hopefully of false positive test results. She also advised me to take evening primrose oil, which is costly, of dubious efficacy and not available on prescription. Some sufferers fall prey to quackery. I was sent a link to a “miracle cure” – on a ferry moored in international waters where MS patients are injected with a serum made from the blood of goats exposed to HIV. No, thanks.
I was on my own. Fortunately, I can usually cope. I work when I am not too exhausted, when my sight is at its best.I was on my own. Fortunately, I can usually cope. I work when I am not too exhausted, when my sight is at its best.
The delay in unravelling the cause of my symptoms is not unique. The MS Society’s chief executive, Michelle Mitchell says: “Being misdiagnosed or experiencing symptoms that can’t be explained can put a considerable strain on people’s emotions and health. A fast, accurate diagnosis enables people to take steps to begin to manage their condition, access treatment and take greater control of their lives again.”The delay in unravelling the cause of my symptoms is not unique. The MS Society’s chief executive, Michelle Mitchell says: “Being misdiagnosed or experiencing symptoms that can’t be explained can put a considerable strain on people’s emotions and health. A fast, accurate diagnosis enables people to take steps to begin to manage their condition, access treatment and take greater control of their lives again.”
For me, relief came in knowing that I wasn’t losing my mind. Nor was I being lazy. Many days, I can pass for healthy. But it took years before I felt able to tell friends that my diagnosis was definitive, as many had been so unsympathetic. I came to terms with my illness. Now I hope GPs use the MS Society’s new diagnostic e-learning module, so patients will not be told to “stop being hysterical”. We’re not. We are ill.For me, relief came in knowing that I wasn’t losing my mind. Nor was I being lazy. Many days, I can pass for healthy. But it took years before I felt able to tell friends that my diagnosis was definitive, as many had been so unsympathetic. I came to terms with my illness. Now I hope GPs use the MS Society’s new diagnostic e-learning module, so patients will not be told to “stop being hysterical”. We’re not. We are ill.