Sounds a lot like my own case. Several episodes of unilateral facial hypersensitivity, occurring every few months. Then episodes of vertigo diagnosed as labyrinthitis, and in between left with unsteadiness. GP told me neurologist had seen ‘something’ on MRI but he told me directly that I shouldn’t be concerned, all was normal and I should get on with life. However I continued to experience vertigo and imbalance. Not until roughly 8 years later did a relapse affect my walking. If I’d received a diagnosis and treatment in the beginning I wonder if I would have developed spinal cord lesions and mobility problems.
This was a good read. Thanks you. Depending on which medical professional you speak to it It can a feel a bit like either everything is MS and related to your diagnosis so speak to that team or nothing is your MS.
Your post will bring comfort to many patients whose experience is that they are being rejected, dismissed, marginalized. Left in limbo by neurologists intent on finding every excuse under the sun not to diagnose and therefore not to treat.
I imagine it's those patients with "CIS" and being told definitively they don't have MS - coming back to you 8 years later practically incapable of walking, hoping against hope that at least somebody will believe them let alone provided diagnosis that can be treated. And of course by this time there isn't nearly as much neurological reserve to preserve, yet another patient failed by an excess of caution - time is brain...
I have a question. My current neurologist is questioning my Dx of MS. What he is going on is that my spinal tap was negative. I have many lesions, old and new and changes each 6 month followup MRI. I have now (in the past 2 years) started developing lesion in the cervical spine and have 8 now on my brainstem. I dont know what else it could be other than MS but he keeps referring back to the negative spinal tap done 6 years ago. Is it possible to have MS with a negative spinal tap? he has not ordered any other tests and my clinical history bears out some form of demylenating disease. I am barely able to walk now from the damage of over 100 lesions in my brain.
This is very interesting for me. My MS was diagnosed with an INO just like in your video. I had a completely clear MRI at the time and was told it was benign.
I had actually suffered a numb leg only 3 months prior to the INO as well, and at that stage had been to my GP who examined me, found an absent ankle jerk reflex on that side, then just told me to wait and see. I'll never be sure why that didn't lead to a referral but there we go.
I had 8 years with no symptoms then a relapse with some small MRI changes and was started on Ocrelizumab. I have been well since and function normally. I will always wonder if those 8 years would have made a difference (be kind, i know the answer!) but your blog has now informed me why my MRI was normal post-INO.
So I’ve seen before, some estimates of how many are diagnosed with clinically isolated syndrome and then an overwhelming majority of these people going on to develop MS. So what are we willing to tolerate in order to not make an inaccurate diagnosis and send a person into hell before or if it is necessary? Isn’t that the question? Is this the fork in the road (perhaps unavoidable) that invites all the future doubts, confusions, slippery slopes, gaslighting, and resentments? Rarely do I hear from or about the individual that was diagnosed and treated who wound up not having MS. Actually, I don’t think I’ve ever heard it. It seems always to be the other way around; the person who wasn’t treated and their subsequent animosities to… anything or everything, justified or not. The worst enemy in all this is called “partial/variable reinforcement” in a classical conditioning sense. Makes it hard to change course from, and easy to believe in, anything. MS is so variable, and there is so much data out there, that if one is inclined to hunt but not be truly objective, they will find what they are motivated to look for.
In a university on student insurance, I was told (when the doctor poked his head in the room), in 1991 that my CAT Scan had a few dots and this is often what MS looks like in the beginning, but everything for the time being was OK. Really no other discussion. I had no plans to continue with that Dr. as I would soon be leaving that town. We all wanted to be sure I wasn’t having a stroke. I spent a few days at the university library, decided to try a couple things for “1991 MS”, and then continued doing my doctoral stuff. Later I was able to accurately assume my diagnosis and saw other neurologists, one particularly good one, I think.
Bottom line? This is all very, VERY difficult stuff for everyone and some are better prepared than others, both Doctors and patients. That’s why this Selfie is invaluable. We had nothing like it “back in the day”.
I could be this case myself. April 2020 onset dx disequilibrium and vertigo. October 2020 dx optic neuritis. All mimic diseases ruled out by neuro otologist, rheumatologist, vestibular therapy etc. December 2020 developed left hemibody weakness, numbness and tingling. June 2021 ocular flutter with nausea and vomiting. 2 small non specific brain lesions in posterior periventricular space and juxtacortical insular region. Dx with CIS in December 2020, started Tysabri Feb 2021 but made symptoms worse including worsening ocular flutter and tremors, weakness, numbness that spread to right side. LP on Tysabri for 9 mos normal IGG, no OCB, high protein and albumin. Otherwise wnl. Stopped Tysabri in December 2021 and have returned to my baseline of vision issues, disequilibrium and LHB symptoms. No new lesions on MRIs but reluctant to take another MS specific medication after how it went with Tysabri. Requested a broader approach such as B cell depleter or IVIG but have been basically ignored. MOG and NMO test were negative in 2020 never ordered in 2021 and in the process of trying to get repeat testing now at Mayo Clinic. The struggle is real if being dismissed and ignored even when there are numerous finding to support something is wrong. Which leads me to ask do you still see patients in clinic?
Since I’m old, I wasted plenty of time in the early 90s. This is pre-Betaseron lottery. I had the wildest symptoms that would magically disappear and I kept everything to myself, convinced it was stress. Tests were fine, for a few years. When it finally became too difficult with parasthesias, “the hug”, balance etc, my GP was my champion. He knew it was MS and I, a rational person, had to finally admit all these bizarre symptoms I’d not shared with anyone. Then I had abnormal MRIs that would often come back as “normal for age.” (Hey! I was maybe 40?) Then eventually I had a neurologist who would swear at the reports in a cheerful way: “that’s not a normal MRI!! I wish they’d stop doing that!” Then there appeared a T-spine lesion. My LP was normal, but an EMG wasn’t. I was having all manner of bladder and spasticity, but we were treating symptoms very well. By the time the color vision in my left eye went haywire for a day, Avonex came out and I was put on it immediately. My history was so consistent with MS, they didn’t want to do nothing. I remember the early years of “probable MS” were infuriating when everything else was ruled out. I’ve no clue how long I’ve had this disease. I don’t know about anyone else, but I was the only sprightly young person I know of that would say “you people have a ball” and run the other way when everyone yelled “Look! HOT TUB!!” Even back then, I couldn’t function in heat. One of my favorite neurologists over the years claimed hot bathing was one old way they used to diagnose MS. I’m not certain about that, but I’m sure the MRIs are much better now. (What say you, Prof G?) Anyhow, in those days, I’d say it took many doctors and much was clinically diagnosed. And you needed an advocate! At least that was my experience. Thank you for this, Dr G, and best to all of you brave fellow souls.
More good news.....you think you are stable but actually nobody really knows as the grey matter cannot be measured. The CIS diagnosis is a sore point for me. One definitive spinal lesion gave me a CIS diagnosis but the brain scan reported several non-specific white matter lesions which were dismissed as being with the borderlands of normal. Even now neurologists look at my brain scan and say it is close to normal. This is some comfort although who knows whats going on in the grey areas. The CIS copout is costing way too many people for a disease which requires early intervention and a patients hope for good news, that your numb foot or face is nothing to worry about, an isolated incident, usually stops them from taking things further. This is demonstrated by your case study where the patient actually wanted you to pull back from your diagnosis. I was on the other side - requested a LP but was told it was unnecessary. Maybe i will call the BBC. Out of interest, how many patients are diagnosed with MS each day? i feel like the postcode lottery needs levelling out somewhat, where referrals can be made to a regional centre for instance to prevent regular neurologists from sending patients down the wrong path - hope leading to less
When I had Transverse Myelitis (CIS) and asked why nobody had done an MRI of my head, I was told that if it showed MS, there would be no effective treatment, so best not to look. Many years later I looked after a patient in General Practice who had multiple episodes of what I thought were MS relapses. The neurology department got an MRI which showed only one lesion and we were told it wasn’t MS. A few years later, without disease modifying medicine, the lesion had multiplied and the diagnosis of MS was made.
sorry folks I didi not realise link would not work .Here is the long story
Healthcare 27/09/2022
Multiple failures led to woman's delayed diagnosis of multiple sclerosis -
The nine-year ordeal caused "distress" to the woman.
Deputy Health and Disability Commissioner found Canterbury District Health Board and an unnamed GP failed a woman in multiple areas, resulting in a delayed diagnosis of multiple sclerosis (MS).
In 2010 the woman was referred by her GP to the ophthalmology service at the public hospital after suddenly losing her vision.
The woman was diagnosed with demyelinating optic neuritis - inflammation of the optic nerve, which Dr Calwell said is often associated with MS.
A subsequent MRI confirmed the woman had optic neuritis, along with abnormal white matter lesions in the woman's brain - raising the chances of primary demyelination.
A year later, the woman was then referred to the neurology service where she would undergo further assessment, and was prioritised as "semi-urgent".
But with limitations on resources the woman's referral was denied and she was advised to remain under the care of her GP.
In 2015 she took herself to a GP at a new medical centre when tingling in her left arm and legs began, resulting in the woman falling over multiple times on different occasions.
The GP ordered screening tests to investigate a provisional diagnosis of a mini-stroke or an inflammatory disorder.
Dr Caldwell said the GP did not refer the woman for specialist assessment by a neurologist or ordered a management plan for follow-up advice or structured review of the woman's results.
Three years later, in 2018 the woman presented herself again at the same medical centre, this time seen by a different GP.
Dr Caldwell said the new GP's impression was that the woman had a migraine and inner-ear disorder causing vertigo. A couple of days passed and the woman called the medical centre as symptoms continued.
"Clinical records do not indicate whether the nurse who took the call discussed this with the GP, or what actions were taken to follow-up with the woman."
The woman was then referred urgently in 2019 to the neurology service by the medical centre after presenting to another GP.
That GP found clinical documentation from 2011 noting that the woman's MRI had shown features consistent with demyelination.
A couple of weeks follow and the woman was diagnosed with MS.
Dr Caldwell says the several-year ordeal caused "distress" to the woman, adding that the nine-year late diagnosis was a missed opportunity for the woman to receive earlier treatment.
"I acknowledge the extraordinary circumstances that faced Canterbury following the earthquake in 2011 and the resulting resource constraints, but I do not consider it was reasonable for the woman's neurology referral to have been declined without any further advice being offered."
Dr Caldwell said the service failure was a contributing factor in the woman receiving a neurological review and treatment the woman needed.
Dr Caldwell found the GP who saw the woman in 2015 was in breach of the Code of Health and Disability Services Consumers' Rights.
"The care provided by the GP did not meet the required standard due to the lack of a referral for specialist assessment by a neurologist, and the lack of a follow-up action plan."
Dr Caldwell didn't find the medical centre in breach of the Code, however, she made comments about the nurse's lack of documentation about the conversation over the phone.
She said Waitaha Canterbury has since made multiple changes to its processes, systems and procedures.
She added that she recommended Waitaha Canterbury provide the woman with a formal written apology for the care she received.
The GP has since retired from practice but she recommended he also provide a formal written apology to the woman.
The nurse has been advised by Dr Caldwell to undertake documentation training.
this link is more a case of not just incompetence but stupidity aka lack of commmon sense multiple times by multiple people - disastrous for the patient but no significant repercussions for those she trusted to help her.
Off topic, or maybe not.I have an appointment with my neurologist on Friday to determine if I have CIS or MS or something else because I only have one lesion and negative bands. If I have MS or CIS would you recommend using Cladribrine?
Sending you prayers, I was diagnosed in 2010 and seemed to go down hill quickly. In six years I could no longer work and had real problems with balance and joint pain. Brain fog was really bad sometimes. I took rebif and had a lot of problems and had to quit. I have been on techfadera (not spelled right) for a few years and have several side effects. I felt lost and decided to quit my meds due to side effects. Our care provider introduced me to Ayurvedic treatment. I had a total decline of all symptoms including vision problems, numbness and others. Sometimes, i totally forget i ever had MS. Visit Natural Herbs Centre web-site naturalherbscentre. com. I am very pleased with this treatment. I eat well, sleep well and exercise regularly. God bless all MS Warriors
What’s your stance on starting DMTs? I have 6 lesions and a diagnosis of MS but have had symptoms for 13 years I am 33 now and my neurologist has said I don’t need to have DMTs
Sounds a lot like my own case. Several episodes of unilateral facial hypersensitivity, occurring every few months. Then episodes of vertigo diagnosed as labyrinthitis, and in between left with unsteadiness. GP told me neurologist had seen ‘something’ on MRI but he told me directly that I shouldn’t be concerned, all was normal and I should get on with life. However I continued to experience vertigo and imbalance. Not until roughly 8 years later did a relapse affect my walking. If I’d received a diagnosis and treatment in the beginning I wonder if I would have developed spinal cord lesions and mobility problems.
This was a good read. Thanks you. Depending on which medical professional you speak to it It can a feel a bit like either everything is MS and related to your diagnosis so speak to that team or nothing is your MS.
Your post will bring comfort to many patients whose experience is that they are being rejected, dismissed, marginalized. Left in limbo by neurologists intent on finding every excuse under the sun not to diagnose and therefore not to treat.
I imagine it's those patients with "CIS" and being told definitively they don't have MS - coming back to you 8 years later practically incapable of walking, hoping against hope that at least somebody will believe them let alone provided diagnosis that can be treated. And of course by this time there isn't nearly as much neurological reserve to preserve, yet another patient failed by an excess of caution - time is brain...
I have a question. My current neurologist is questioning my Dx of MS. What he is going on is that my spinal tap was negative. I have many lesions, old and new and changes each 6 month followup MRI. I have now (in the past 2 years) started developing lesion in the cervical spine and have 8 now on my brainstem. I dont know what else it could be other than MS but he keeps referring back to the negative spinal tap done 6 years ago. Is it possible to have MS with a negative spinal tap? he has not ordered any other tests and my clinical history bears out some form of demylenating disease. I am barely able to walk now from the damage of over 100 lesions in my brain.
This is very interesting for me. My MS was diagnosed with an INO just like in your video. I had a completely clear MRI at the time and was told it was benign.
I had actually suffered a numb leg only 3 months prior to the INO as well, and at that stage had been to my GP who examined me, found an absent ankle jerk reflex on that side, then just told me to wait and see. I'll never be sure why that didn't lead to a referral but there we go.
I had 8 years with no symptoms then a relapse with some small MRI changes and was started on Ocrelizumab. I have been well since and function normally. I will always wonder if those 8 years would have made a difference (be kind, i know the answer!) but your blog has now informed me why my MRI was normal post-INO.
So I’ve seen before, some estimates of how many are diagnosed with clinically isolated syndrome and then an overwhelming majority of these people going on to develop MS. So what are we willing to tolerate in order to not make an inaccurate diagnosis and send a person into hell before or if it is necessary? Isn’t that the question? Is this the fork in the road (perhaps unavoidable) that invites all the future doubts, confusions, slippery slopes, gaslighting, and resentments? Rarely do I hear from or about the individual that was diagnosed and treated who wound up not having MS. Actually, I don’t think I’ve ever heard it. It seems always to be the other way around; the person who wasn’t treated and their subsequent animosities to… anything or everything, justified or not. The worst enemy in all this is called “partial/variable reinforcement” in a classical conditioning sense. Makes it hard to change course from, and easy to believe in, anything. MS is so variable, and there is so much data out there, that if one is inclined to hunt but not be truly objective, they will find what they are motivated to look for.
In a university on student insurance, I was told (when the doctor poked his head in the room), in 1991 that my CAT Scan had a few dots and this is often what MS looks like in the beginning, but everything for the time being was OK. Really no other discussion. I had no plans to continue with that Dr. as I would soon be leaving that town. We all wanted to be sure I wasn’t having a stroke. I spent a few days at the university library, decided to try a couple things for “1991 MS”, and then continued doing my doctoral stuff. Later I was able to accurately assume my diagnosis and saw other neurologists, one particularly good one, I think.
Bottom line? This is all very, VERY difficult stuff for everyone and some are better prepared than others, both Doctors and patients. That’s why this Selfie is invaluable. We had nothing like it “back in the day”.
I could be this case myself. April 2020 onset dx disequilibrium and vertigo. October 2020 dx optic neuritis. All mimic diseases ruled out by neuro otologist, rheumatologist, vestibular therapy etc. December 2020 developed left hemibody weakness, numbness and tingling. June 2021 ocular flutter with nausea and vomiting. 2 small non specific brain lesions in posterior periventricular space and juxtacortical insular region. Dx with CIS in December 2020, started Tysabri Feb 2021 but made symptoms worse including worsening ocular flutter and tremors, weakness, numbness that spread to right side. LP on Tysabri for 9 mos normal IGG, no OCB, high protein and albumin. Otherwise wnl. Stopped Tysabri in December 2021 and have returned to my baseline of vision issues, disequilibrium and LHB symptoms. No new lesions on MRIs but reluctant to take another MS specific medication after how it went with Tysabri. Requested a broader approach such as B cell depleter or IVIG but have been basically ignored. MOG and NMO test were negative in 2020 never ordered in 2021 and in the process of trying to get repeat testing now at Mayo Clinic. The struggle is real if being dismissed and ignored even when there are numerous finding to support something is wrong. Which leads me to ask do you still see patients in clinic?
Sincerely,
Desperate, ignored, gaslighted, female DNP
Since I’m old, I wasted plenty of time in the early 90s. This is pre-Betaseron lottery. I had the wildest symptoms that would magically disappear and I kept everything to myself, convinced it was stress. Tests were fine, for a few years. When it finally became too difficult with parasthesias, “the hug”, balance etc, my GP was my champion. He knew it was MS and I, a rational person, had to finally admit all these bizarre symptoms I’d not shared with anyone. Then I had abnormal MRIs that would often come back as “normal for age.” (Hey! I was maybe 40?) Then eventually I had a neurologist who would swear at the reports in a cheerful way: “that’s not a normal MRI!! I wish they’d stop doing that!” Then there appeared a T-spine lesion. My LP was normal, but an EMG wasn’t. I was having all manner of bladder and spasticity, but we were treating symptoms very well. By the time the color vision in my left eye went haywire for a day, Avonex came out and I was put on it immediately. My history was so consistent with MS, they didn’t want to do nothing. I remember the early years of “probable MS” were infuriating when everything else was ruled out. I’ve no clue how long I’ve had this disease. I don’t know about anyone else, but I was the only sprightly young person I know of that would say “you people have a ball” and run the other way when everyone yelled “Look! HOT TUB!!” Even back then, I couldn’t function in heat. One of my favorite neurologists over the years claimed hot bathing was one old way they used to diagnose MS. I’m not certain about that, but I’m sure the MRIs are much better now. (What say you, Prof G?) Anyhow, in those days, I’d say it took many doctors and much was clinically diagnosed. And you needed an advocate! At least that was my experience. Thank you for this, Dr G, and best to all of you brave fellow souls.
More good news.....you think you are stable but actually nobody really knows as the grey matter cannot be measured. The CIS diagnosis is a sore point for me. One definitive spinal lesion gave me a CIS diagnosis but the brain scan reported several non-specific white matter lesions which were dismissed as being with the borderlands of normal. Even now neurologists look at my brain scan and say it is close to normal. This is some comfort although who knows whats going on in the grey areas. The CIS copout is costing way too many people for a disease which requires early intervention and a patients hope for good news, that your numb foot or face is nothing to worry about, an isolated incident, usually stops them from taking things further. This is demonstrated by your case study where the patient actually wanted you to pull back from your diagnosis. I was on the other side - requested a LP but was told it was unnecessary. Maybe i will call the BBC. Out of interest, how many patients are diagnosed with MS each day? i feel like the postcode lottery needs levelling out somewhat, where referrals can be made to a regional centre for instance to prevent regular neurologists from sending patients down the wrong path - hope leading to less
Do Neurologists routinely measure brain volume (loss)? I've never heard mine discussed.
When I had Transverse Myelitis (CIS) and asked why nobody had done an MRI of my head, I was told that if it showed MS, there would be no effective treatment, so best not to look. Many years later I looked after a patient in General Practice who had multiple episodes of what I thought were MS relapses. The neurology department got an MRI which showed only one lesion and we were told it wasn’t MS. A few years later, without disease modifying medicine, the lesion had multiplied and the diagnosis of MS was made.
sorry folks I didi not realise link would not work .Here is the long story
Healthcare 27/09/2022
Multiple failures led to woman's delayed diagnosis of multiple sclerosis -
The nine-year ordeal caused "distress" to the woman.
Deputy Health and Disability Commissioner found Canterbury District Health Board and an unnamed GP failed a woman in multiple areas, resulting in a delayed diagnosis of multiple sclerosis (MS).
In 2010 the woman was referred by her GP to the ophthalmology service at the public hospital after suddenly losing her vision.
The woman was diagnosed with demyelinating optic neuritis - inflammation of the optic nerve, which Dr Calwell said is often associated with MS.
A subsequent MRI confirmed the woman had optic neuritis, along with abnormal white matter lesions in the woman's brain - raising the chances of primary demyelination.
A year later, the woman was then referred to the neurology service where she would undergo further assessment, and was prioritised as "semi-urgent".
But with limitations on resources the woman's referral was denied and she was advised to remain under the care of her GP.
In 2015 she took herself to a GP at a new medical centre when tingling in her left arm and legs began, resulting in the woman falling over multiple times on different occasions.
The GP ordered screening tests to investigate a provisional diagnosis of a mini-stroke or an inflammatory disorder.
Dr Caldwell said the GP did not refer the woman for specialist assessment by a neurologist or ordered a management plan for follow-up advice or structured review of the woman's results.
Three years later, in 2018 the woman presented herself again at the same medical centre, this time seen by a different GP.
Dr Caldwell said the new GP's impression was that the woman had a migraine and inner-ear disorder causing vertigo. A couple of days passed and the woman called the medical centre as symptoms continued.
"Clinical records do not indicate whether the nurse who took the call discussed this with the GP, or what actions were taken to follow-up with the woman."
The woman was then referred urgently in 2019 to the neurology service by the medical centre after presenting to another GP.
That GP found clinical documentation from 2011 noting that the woman's MRI had shown features consistent with demyelination.
A couple of weeks follow and the woman was diagnosed with MS.
Dr Caldwell says the several-year ordeal caused "distress" to the woman, adding that the nine-year late diagnosis was a missed opportunity for the woman to receive earlier treatment.
"I acknowledge the extraordinary circumstances that faced Canterbury following the earthquake in 2011 and the resulting resource constraints, but I do not consider it was reasonable for the woman's neurology referral to have been declined without any further advice being offered."
Dr Caldwell said the service failure was a contributing factor in the woman receiving a neurological review and treatment the woman needed.
Dr Caldwell found the GP who saw the woman in 2015 was in breach of the Code of Health and Disability Services Consumers' Rights.
"The care provided by the GP did not meet the required standard due to the lack of a referral for specialist assessment by a neurologist, and the lack of a follow-up action plan."
Dr Caldwell didn't find the medical centre in breach of the Code, however, she made comments about the nurse's lack of documentation about the conversation over the phone.
She said Waitaha Canterbury has since made multiple changes to its processes, systems and procedures.
She added that she recommended Waitaha Canterbury provide the woman with a formal written apology for the care she received.
The GP has since retired from practice but she recommended he also provide a formal written apology to the woman.
The nurse has been advised by Dr Caldwell to undertake documentation training.
this link is more a case of not just incompetence but stupidity aka lack of commmon sense multiple times by multiple people - disastrous for the patient but no significant repercussions for those she trusted to help her.
https://www.newshub.co.nz/home/new-zealand/2022/09/multiple-failures-led-to-woman-s-delayed-diagnosis-of-multiple-sclerosis-report.html
Off topic, or maybe not.I have an appointment with my neurologist on Friday to determine if I have CIS or MS or something else because I only have one lesion and negative bands. If I have MS or CIS would you recommend using Cladribrine?
Sending you prayers, I was diagnosed in 2010 and seemed to go down hill quickly. In six years I could no longer work and had real problems with balance and joint pain. Brain fog was really bad sometimes. I took rebif and had a lot of problems and had to quit. I have been on techfadera (not spelled right) for a few years and have several side effects. I felt lost and decided to quit my meds due to side effects. Our care provider introduced me to Ayurvedic treatment. I had a total decline of all symptoms including vision problems, numbness and others. Sometimes, i totally forget i ever had MS. Visit Natural Herbs Centre web-site naturalherbscentre. com. I am very pleased with this treatment. I eat well, sleep well and exercise regularly. God bless all MS Warriors
What’s your stance on starting DMTs? I have 6 lesions and a diagnosis of MS but have had symptoms for 13 years I am 33 now and my neurologist has said I don’t need to have DMTs