The neurologist who gave me my diagnosis in 2009 (by text) has since been struck-off so it is no surprise mine was 'fucked-up' for want of better words! He told me I had lesions on my brain and spinal cord but that it was 'crap' MS so he should never need to see me again. I wasn't offered any treatment or follow-up. He walked me to the door of the waiting room full of people in wheelchairs and told me to come back if I ended up like that. It never seemed right but put it down to him being an overly intelligent eccentric. I'll never forget seeing his face on the news and instantly knowing something was very wrong. By the time I got to see a neurologist I had what is described as a very heavy lesion load and SPMS. I don't meet the criteria for any DMT as I haven't had any new lesions since I started having MRIs again (they won't count the new ones between 2009 and 2018) so am now left to rot.
If that is worthy of legal action, many of us will be wealthy.
I honestly think that just because “now” we recognize this, neurologists were going on old information. In my case, neuro never saw an active lesion (MRIs 8 weeks or more later), and told me one more non-active lesion doesn’t count. So I added one by one over three years with increasing disability.
Was he negligent? Yep: there are thousands more out there.
However the cost to our health care systems for legal action - this would be a massive can of worms.
I was diagnosed last year at age 45. From symptom onset to diagnosis (MRI results) was 5 days for me! Confirmed a month later by a neurologist. Started off on Tecfidera but then did more research and opted for Natalizumab and so far so good 😊
I had MS since I was a child, have been severely disabled for decades with every MS symptom, but the NHS didn't believe me and didn't care. Dozens of 'medical professionals'. They insisted I was mentally ill and imagining my symptoms. Even after I went almost blind in both eyes from Optic Neuritis. They misdiagnosed me with Chronic Fatigue Syndrome without ever letting me have an MRI scan or see a neurologist. The medical negligence, brainwashing, and discrimination was staggering.
I eventually diagnosed myself correctly via Google and saw a neurologist privately. By that point I had 'significant cerebral atrophy', a wheelchair, and complex PTSD.
The NHS utterly destroyed me. One then has only a year to make complaints (to the same people who abused one), and 3 years to sue. I was too ill and traumatized. I'm just out of time. I'm finding it all very, very hard to live with.
I was referred to a neurologist by my family doctor in 2010. I had tingling in my arms and legs. The neurologist administered an EMG, which came back as normal. She then ordered an MRI for my lower spine only, which now seems ridiculous. She did not come to a diagnosis, but her guesses were that I had some minor arthritis in my lower spine along with possible endometriosis symptoms. I had been diagnosed and treated for endometriosis in 1985. I had not educated myself enough about MS and trusted her assessment. Looking back, I wish I had asked more questions and pushed for a follow-up with a different neurologist or even a brain MRI or puncture. Five years later I did have a defining symptom, which led to an ER visit. I had lost the use of my left hand/arm and was tested for a stroke. Since I did not have a stroke, I was referred to a different neurologist, but had to wait six months for a visit. He ordered several MRIs over another six months and did not believe that the white spots on my brain were MS, but due to “aging” (I was 50 at the time). He questioned the shadow on my spine picked up by the MRI. He prescribed Gilenya, “just in case”. I wound up moving to a new state a few months later, after my husband’s death. A third neurologist made a definitive diagnosis of MS. My current and fourth neurologist agrees with the MS diagnosis and has since prescribed Mavenclad, which has made a positive change in my symptoms. I understand that MS can be difficult to diagnose, but there has to be a better course of action.
I presented a number of times to my GP with what I now know was relapses, there was def many missed opportunities for further investigations/ timely diagnosis.
By the time MS was diagnosed I had heavy lesion load on brain and spine and poor prognosis. Further investigation/ diagnosis was only brought about by my own insistence and willingness to pay for mri/s myself.
It’s very frustrating to think of the early treatment opportunities that were missed. I do hope things are better in this regard for people presenting to Dr’s now, but I’m not sure covid and telemedicine does much to help
I think there can be tunnel vision when looking at MRI results! When I had tingling in my hands and feet my GP, thinking it might be spinal compression, sent me to A&E and they sent me for an MRI. The MRI report my GP received stated it was normal. Fortunately he also referred me to a neurologist who, when looking a my MRI stated "I can't believe anyone could look at that and say it was normal when you have 4 bloody great lesions on your spine!" I was subsequently diagnosed with PPMS which came as a relief as I had suffered from life limiting fatigue for many years.
I wonder when a legal threshold will be established regarding the available clinical proof that the sooner a patient is started on a high-efficacy therapy then the better their long-term prognosis is?
Ergo, were a patient to be diagnosed and the appropriate medications not suggested as a starting point, once this threshold of proof has been established, and the patient deteriorated faster than expected had they experienced a more efficacious intervention sooner could they also claim negligence?
I do feel a good lawyer could squirm out of that one. There is failure to diagnose on the one hand but also a failure to treat effectively on the other leading to a faster accumulation of a greater level of disability.
Were I the lawyer for the insurers I'd try to inject enough doubt about the patient hesitancy to clear my client, the doctor. However, were I the lawyer for the patient I'd argue that the long-term consequences of going 'gently' had not been fully explained to my client. In addition, the likely long-term outcomes of the disease when treated with varying efficacies of medication had not been properly explained to them.
Were I the treating neurologist I'd want the patient to sign off on the fact that they had had all the details laid before them so that they could make a fully informed decision having had sufficient information to contextualise all the risks.
I was diagnosed with MS at a top hospital with no spinal tap, then diagnosed with NMO at a different top hospital with new MRI and tap b/c MRI said ‘decavitation’ but no spots. That ms neurologist switched back to MS after the NMO blood test became available... and the dreaded spots on the MRIs finally appeared.
In approx 2008, aged around 24, I had an MRI after years of tinnitus. At the time I worked at the hospital in question and a colleague (perhaps a bit naughtily) let me view the images. I took pictures of said scan on my phone and marvelled at slices of my brain… then got the all clear and that was that. A bit of novelty; nothing more, nothing less.
Cut to 2020 and I find myself in A&E with loss of function on the right side of my body; within 24 hours I am diagnosed with MS. Later, I find out at that point I had approx 25 brain lesions - and obviously I find myself wondering when it could have started. I then read that tinnitus is a possible MS symptom, and I think back to that earlier scan… I unearth the pictures on my laptop and I find myself questioning whether I can see two or three lesions on it. But then I’m not a medical person (and I’m certainly not a person who can interpret brain scans), and also I’m not sure of the wisdom of opening that particular Pandora’s Box….
But I still find I can’t quite put it to bed. What do I do? Request my medical records and try to get a definitive answer, or just try to accept there might well have been a fuck up at “St Elsewhere” and that I can’t change the past?
Reading this case really struck a cord with me. Living in the U.K., I had sudden temporary hearing loss in 2009, subsequent MRI showed lesions and the lumbar puncture showed the presence of IgG bands. I was then diagnosed with CIS as I “only” really had one relapse. Sent home and told to live my live and not to worry….no treatment or follow up.
12 years later,I started to notice difficulties with balance, weakness in both legs alongside other symptoms that everyone told me were stress related. I insisted on further investigations and MRIs now show lesions in spinal cord and many in my brain. After 12 years I was finally diagnosed with RRMS and am now on Rituximab. Diagnosis was made here in Croatia…my neurologist said to me looking at my MRI from back then, it was MS 12 years ago and absolutely shocked that no one ever followed up.
My BIG learning, self educate, be persistent and get second opinions if possible.
When the children reach legal age and - sadly - realise that their parents have effectively caused them harm then I could foresee a few messy lawsuits.
Can you pls explain the OCBs and dissemination in time please? Do OCBs always stay positive after a previous relapse and if tested at presentation how can one be sure they aren’t linked to that presentation itself? Are OCBs only present if MS has been active prior to the presenting relapse?
Im really truely convinced my diagnosis is incorrect. I would really like you to review it and have tried to reach you on here, email and twitter. I have all information pertaining to my diagnosis and specific case. There are so many symptoms that are nowhere to be found in ms literature and things that work treatmentwise that are not placebo but no one is listening to me and i am starting to feel like im crazy for questioning it. I would happily pay whatever i need to just to get 5 minutes of your time to overlook it and wouldnt expect specific advice.
My ordeal started in 1999 with tingling and muscle twitches. That prompted my first visit with a neurologist and testing. That ended with an offer of Valium and told to “chill out”.
Then a severe headache and face pain that prompted a new visit with a second neurologist. More tests and a brain MRI . That ended with a prescription Ambien.
Then bouts of numbness and my leg giving out. Falling. This was a third visit with a third neurologist. More tests, MRI.
Told that I had some white spots on my MRI and come back in six months!
Well, my problem with walking and falling persisted so I sought out a new neurologist. I showed him the brain MRI from the last visit and he diagnosed me right then and there with possible MS. He confirmed this with a spinal tap and an MRI of the spine and thoracic area. All in all that took 10 years!
The neurologist who gave me my diagnosis in 2009 (by text) has since been struck-off so it is no surprise mine was 'fucked-up' for want of better words! He told me I had lesions on my brain and spinal cord but that it was 'crap' MS so he should never need to see me again. I wasn't offered any treatment or follow-up. He walked me to the door of the waiting room full of people in wheelchairs and told me to come back if I ended up like that. It never seemed right but put it down to him being an overly intelligent eccentric. I'll never forget seeing his face on the news and instantly knowing something was very wrong. By the time I got to see a neurologist I had what is described as a very heavy lesion load and SPMS. I don't meet the criteria for any DMT as I haven't had any new lesions since I started having MRIs again (they won't count the new ones between 2009 and 2018) so am now left to rot.
If that is worthy of legal action, many of us will be wealthy.
I honestly think that just because “now” we recognize this, neurologists were going on old information. In my case, neuro never saw an active lesion (MRIs 8 weeks or more later), and told me one more non-active lesion doesn’t count. So I added one by one over three years with increasing disability.
Was he negligent? Yep: there are thousands more out there.
However the cost to our health care systems for legal action - this would be a massive can of worms.
I was diagnosed last year at age 45. From symptom onset to diagnosis (MRI results) was 5 days for me! Confirmed a month later by a neurologist. Started off on Tecfidera but then did more research and opted for Natalizumab and so far so good 😊
My diagnosis was delayed for 30 years.
I had MS since I was a child, have been severely disabled for decades with every MS symptom, but the NHS didn't believe me and didn't care. Dozens of 'medical professionals'. They insisted I was mentally ill and imagining my symptoms. Even after I went almost blind in both eyes from Optic Neuritis. They misdiagnosed me with Chronic Fatigue Syndrome without ever letting me have an MRI scan or see a neurologist. The medical negligence, brainwashing, and discrimination was staggering.
I eventually diagnosed myself correctly via Google and saw a neurologist privately. By that point I had 'significant cerebral atrophy', a wheelchair, and complex PTSD.
The NHS utterly destroyed me. One then has only a year to make complaints (to the same people who abused one), and 3 years to sue. I was too ill and traumatized. I'm just out of time. I'm finding it all very, very hard to live with.
I was referred to a neurologist by my family doctor in 2010. I had tingling in my arms and legs. The neurologist administered an EMG, which came back as normal. She then ordered an MRI for my lower spine only, which now seems ridiculous. She did not come to a diagnosis, but her guesses were that I had some minor arthritis in my lower spine along with possible endometriosis symptoms. I had been diagnosed and treated for endometriosis in 1985. I had not educated myself enough about MS and trusted her assessment. Looking back, I wish I had asked more questions and pushed for a follow-up with a different neurologist or even a brain MRI or puncture. Five years later I did have a defining symptom, which led to an ER visit. I had lost the use of my left hand/arm and was tested for a stroke. Since I did not have a stroke, I was referred to a different neurologist, but had to wait six months for a visit. He ordered several MRIs over another six months and did not believe that the white spots on my brain were MS, but due to “aging” (I was 50 at the time). He questioned the shadow on my spine picked up by the MRI. He prescribed Gilenya, “just in case”. I wound up moving to a new state a few months later, after my husband’s death. A third neurologist made a definitive diagnosis of MS. My current and fourth neurologist agrees with the MS diagnosis and has since prescribed Mavenclad, which has made a positive change in my symptoms. I understand that MS can be difficult to diagnose, but there has to be a better course of action.
I presented a number of times to my GP with what I now know was relapses, there was def many missed opportunities for further investigations/ timely diagnosis.
By the time MS was diagnosed I had heavy lesion load on brain and spine and poor prognosis. Further investigation/ diagnosis was only brought about by my own insistence and willingness to pay for mri/s myself.
It’s very frustrating to think of the early treatment opportunities that were missed. I do hope things are better in this regard for people presenting to Dr’s now, but I’m not sure covid and telemedicine does much to help
I think there can be tunnel vision when looking at MRI results! When I had tingling in my hands and feet my GP, thinking it might be spinal compression, sent me to A&E and they sent me for an MRI. The MRI report my GP received stated it was normal. Fortunately he also referred me to a neurologist who, when looking a my MRI stated "I can't believe anyone could look at that and say it was normal when you have 4 bloody great lesions on your spine!" I was subsequently diagnosed with PPMS which came as a relief as I had suffered from life limiting fatigue for many years.
Regarding legal actions:
I wonder when a legal threshold will be established regarding the available clinical proof that the sooner a patient is started on a high-efficacy therapy then the better their long-term prognosis is?
Ergo, were a patient to be diagnosed and the appropriate medications not suggested as a starting point, once this threshold of proof has been established, and the patient deteriorated faster than expected had they experienced a more efficacious intervention sooner could they also claim negligence?
I do feel a good lawyer could squirm out of that one. There is failure to diagnose on the one hand but also a failure to treat effectively on the other leading to a faster accumulation of a greater level of disability.
Were I the lawyer for the insurers I'd try to inject enough doubt about the patient hesitancy to clear my client, the doctor. However, were I the lawyer for the patient I'd argue that the long-term consequences of going 'gently' had not been fully explained to my client. In addition, the likely long-term outcomes of the disease when treated with varying efficacies of medication had not been properly explained to them.
Were I the treating neurologist I'd want the patient to sign off on the fact that they had had all the details laid before them so that they could make a fully informed decision having had sufficient information to contextualise all the risks.
I was diagnosed with MS at a top hospital with no spinal tap, then diagnosed with NMO at a different top hospital with new MRI and tap b/c MRI said ‘decavitation’ but no spots. That ms neurologist switched back to MS after the NMO blood test became available... and the dreaded spots on the MRIs finally appeared.
In approx 2008, aged around 24, I had an MRI after years of tinnitus. At the time I worked at the hospital in question and a colleague (perhaps a bit naughtily) let me view the images. I took pictures of said scan on my phone and marvelled at slices of my brain… then got the all clear and that was that. A bit of novelty; nothing more, nothing less.
Cut to 2020 and I find myself in A&E with loss of function on the right side of my body; within 24 hours I am diagnosed with MS. Later, I find out at that point I had approx 25 brain lesions - and obviously I find myself wondering when it could have started. I then read that tinnitus is a possible MS symptom, and I think back to that earlier scan… I unearth the pictures on my laptop and I find myself questioning whether I can see two or three lesions on it. But then I’m not a medical person (and I’m certainly not a person who can interpret brain scans), and also I’m not sure of the wisdom of opening that particular Pandora’s Box….
But I still find I can’t quite put it to bed. What do I do? Request my medical records and try to get a definitive answer, or just try to accept there might well have been a fuck up at “St Elsewhere” and that I can’t change the past?
Reading this case really struck a cord with me. Living in the U.K., I had sudden temporary hearing loss in 2009, subsequent MRI showed lesions and the lumbar puncture showed the presence of IgG bands. I was then diagnosed with CIS as I “only” really had one relapse. Sent home and told to live my live and not to worry….no treatment or follow up.
12 years later,I started to notice difficulties with balance, weakness in both legs alongside other symptoms that everyone told me were stress related. I insisted on further investigations and MRIs now show lesions in spinal cord and many in my brain. After 12 years I was finally diagnosed with RRMS and am now on Rituximab. Diagnosis was made here in Croatia…my neurologist said to me looking at my MRI from back then, it was MS 12 years ago and absolutely shocked that no one ever followed up.
My BIG learning, self educate, be persistent and get second opinions if possible.
Good to hear how you're progressing with the new website, looking forward to seeing it - thanks for the update
When the children reach legal age and - sadly - realise that their parents have effectively caused them harm then I could foresee a few messy lawsuits.
Can you pls explain the OCBs and dissemination in time please? Do OCBs always stay positive after a previous relapse and if tested at presentation how can one be sure they aren’t linked to that presentation itself? Are OCBs only present if MS has been active prior to the presenting relapse?
Im really truely convinced my diagnosis is incorrect. I would really like you to review it and have tried to reach you on here, email and twitter. I have all information pertaining to my diagnosis and specific case. There are so many symptoms that are nowhere to be found in ms literature and things that work treatmentwise that are not placebo but no one is listening to me and i am starting to feel like im crazy for questioning it. I would happily pay whatever i need to just to get 5 minutes of your time to overlook it and wouldnt expect specific advice.
My ordeal started in 1999 with tingling and muscle twitches. That prompted my first visit with a neurologist and testing. That ended with an offer of Valium and told to “chill out”.
Then a severe headache and face pain that prompted a new visit with a second neurologist. More tests and a brain MRI . That ended with a prescription Ambien.
Then bouts of numbness and my leg giving out. Falling. This was a third visit with a third neurologist. More tests, MRI.
Told that I had some white spots on my MRI and come back in six months!
Well, my problem with walking and falling persisted so I sought out a new neurologist. I showed him the brain MRI from the last visit and he diagnosed me right then and there with possible MS. He confirmed this with a spinal tap and an MRI of the spine and thoracic area. All in all that took 10 years!