I am campaigning to get MS redefined as a biological disease and to get the MS community to move away from the current clinico-radiological definition of MS. Do you agree with me on this?
Absolutely - when I had severe ON in 2003 I was referred to MS clinic, MRI (of only brain, "forgot" to order contrast, if they had done cspine as well they would have found a lesion) did not confirm MS, pitched out and referred to a general neuro for follow-up as. My new near retirement General neuro who also did part time hours at the MS clinic "well dear I was diagnosing MS before the age of MRI, and you have MS, it just hasn't shown up on MRI yet". Another year wait list for MRI got scan of brain and spine and voila. In my case it took a long time for typical lesions to show up in the brain. I still have a very low lesion load but a 4 on the EDSS. Then we had to fight escalating/wait and see model of treatment that was prevalent at that time here in Canada. pretty sure current DMT are treating the effect, not the cause of MS.
Completely agree that MS is a biological disease. I'm slowly losing mobility without any obvious signs on MRI. My neurologist is not interested so please keep campaigning and let us know what we can do to keep the campaign front and centre.
I can’t tell you how happy I am to read this. The gaslighting that many of us must endure when trying to explain symptoms independent of MRI evidence is not acceptable. From my first relapse on I noticed underlying progression that was dismissed as my MRIs were stable. A year on Copaxone with worsening symptoms and stable MRIs I had a severe spinal relapse, it left only a small lesion but much disability. Rather than getting better I felt I was continuing to decline on Gilenya for another 18 months, including one episode where my leg stopped working with no MRI evidence - pain was worsening also and two neuro physios I had to pay to see privately to try and help myself stay strong (public system under resourced) said my spasticity was worsening and an increase in right side limb weakness as they were working regularly with me over period of 18months.
My wonderful consultant wanted to change me to Ocrevus but as I hadn’t technically failed Gilenya it was messy. I had to be admitted to hospital for review from the whole team. Unfortunately my consultant was away when a bed became available and while in hospital I was under the care of a different consultant and I received nothing but constant gaslighting to the point I was seen by the psyche team who were asking me my opinion on psychosomatic disorder within 60 seconds of meeting me. I queried how they could be so sure my symptoms were of a psychological nature when I had a diagnosed neurological disease that could also account for them.
I am passionate about role of mind-body medicine and minding my mental health - even now I still attend regular sessions with a psychotherapist to help me live with this disease - so it was so difficult to have my symptoms constantly dismissed during this period (my therapist even said the way I was treated by the psych team in hosp and some of the questions asked were totally unethical- she was horrified). It has left me with a huge mistrust of the system as this is not the only time I have experienced gaslighting. One doctor when I moved countries wouldn’t look at any of my old MRIs only the one she’d just done and told me I didn’t have MS at all and it was all in my head.
I am lucky that my main consultant in Ireland is kind and listens to his patients even if he is operating in a system that doesn’t, and I have also found a wonderful consultant here in Germany too (I live between the two countries). I have had to learn to trust my own body and at every stage have fought for what I know my body needs. It hasn’t been easy though and when I chat to others with MS to find we have all experienced gaslighting at some stage (even more so in those of us who are female) it makes me angry that in 2021 many doctors still refuse to listen to their patients’ lived experiences of this disease. Apologies again for a long reply but this topic is something I am very passionate about and I’m one of the lucky ones who has a consultant who acknowledges smouldering MS and listens - many sadly do not.
Prof G, can you comment on how much of an add-on effect you think lifestyle changes (mainly exercise) have on brain atrophy? Do you think an intensive exercise program on top of a high-efficacy DMT is enough to normalize brain atrophy?
Thanks for this excellent podcast and article. It absolutely makes sense. Last year I developed the MS hug for the first time, but I was told it was not a relapse because my scans were stable. I felt it was likely further demyelination in my spinal cord where I already have a lesion at T4. I also seem to have deteriorated over the last 12 months even though my MR scans show no new lesions. Hoping switching onto Ocrelizumab is going to help.
Same here. No evidence of new lessions on my MRIs for the past 7 years but my MS is slowly advancing year by year. Currently I'm trying to develop and accept my role as a vegetable, I kinda lost hope.
I'm sure I have a simplistic view of things but if one were to be diagnosed with Systemic lupus erythematosus It is possible to suffer with quite serious Neurological symptoms without there being any lesions visible on MRI but it is a recognised symptom of systemic inflammation and surely if Multiple sclerosis is fundamentally an inflammatory condition then the lack of MRI lesions wouldn't necessarily mean a person wasn't suffering from a relapse I personally have a dual diagnosis of Antiphospholipid syndrome and Multiple sclerosis so have one foot in Rheumatology and the other in Neurology and it is difficult sometimes to know where one begins and the other ends as there is a lot of overlap
Absolutely agree! Over the years on Tysabri I have had several episodes lasting many weeks which I believe to be relapses - mainly spinal cord. MRI doesn’t pick them up! I definitely feel I’m worse. I’ve always believed MS smoulders away under the surface.
7 years ago I started with symptoms of severe headaches, started losing color and then vision in right eye, balance issues, vertigo. Was in OU medical hospital for 8 days spinal taps mri, CT scan showed nothing. Took 4 months get get eye sight back. I did not get diagnosed till Feb 2020. Not on MS meds my neurologist does not want my immune system compromised. She said because I am 65 years old. She usually takes her patients off meds at 65. I am doing good with diet and exercise. I believe a new protocol needs to be developed for MS dignosis.
100000% ignored - I am lumped in the CIS group mentioned that experiences PIRA with optic neuritis and one juxtacortical lesion on Tysabri for a year with progressive worsening of symptoms and no MRI changes so zero entertainment of switching DMT or steroid treatment even though I am mounting disability progression.
So often i feel like I am being gas lighted by my care team when I report symptoms / flares. I would much prefer a realistic and evidence based answer I.e you may be progressing, we are doing everything we can right now to slow the progression and reduce the inflammation, there is still much to learn, instead I get ‘oh that doesn’t sound like an ms symptom’ or ‘I too have to be so careful with my fluid intake and what I wear on my feet’. I really hope others have more empathetic responses which validate their experience
I completely agree. MRI scans are completely inaccurate with MS. The reading of them is also very subjective, different radiographers have reported differently with my scans and the appearance varies when different strength scanners are used. Neurologists don’t always do MRI scans on the spine, even when it is indicated by the symptoms of a relapse. It was this that meant that I couldn’t get HSCT on the NHS and had to pay privately to have it done abroad. I had RRMS and have now been in remission nearly three years.
Absolutely - when I had severe ON in 2003 I was referred to MS clinic, MRI (of only brain, "forgot" to order contrast, if they had done cspine as well they would have found a lesion) did not confirm MS, pitched out and referred to a general neuro for follow-up as. My new near retirement General neuro who also did part time hours at the MS clinic "well dear I was diagnosing MS before the age of MRI, and you have MS, it just hasn't shown up on MRI yet". Another year wait list for MRI got scan of brain and spine and voila. In my case it took a long time for typical lesions to show up in the brain. I still have a very low lesion load but a 4 on the EDSS. Then we had to fight escalating/wait and see model of treatment that was prevalent at that time here in Canada. pretty sure current DMT are treating the effect, not the cause of MS.
~Karen
Completely agree that MS is a biological disease. I'm slowly losing mobility without any obvious signs on MRI. My neurologist is not interested so please keep campaigning and let us know what we can do to keep the campaign front and centre.
I can’t tell you how happy I am to read this. The gaslighting that many of us must endure when trying to explain symptoms independent of MRI evidence is not acceptable. From my first relapse on I noticed underlying progression that was dismissed as my MRIs were stable. A year on Copaxone with worsening symptoms and stable MRIs I had a severe spinal relapse, it left only a small lesion but much disability. Rather than getting better I felt I was continuing to decline on Gilenya for another 18 months, including one episode where my leg stopped working with no MRI evidence - pain was worsening also and two neuro physios I had to pay to see privately to try and help myself stay strong (public system under resourced) said my spasticity was worsening and an increase in right side limb weakness as they were working regularly with me over period of 18months.
My wonderful consultant wanted to change me to Ocrevus but as I hadn’t technically failed Gilenya it was messy. I had to be admitted to hospital for review from the whole team. Unfortunately my consultant was away when a bed became available and while in hospital I was under the care of a different consultant and I received nothing but constant gaslighting to the point I was seen by the psyche team who were asking me my opinion on psychosomatic disorder within 60 seconds of meeting me. I queried how they could be so sure my symptoms were of a psychological nature when I had a diagnosed neurological disease that could also account for them.
I am passionate about role of mind-body medicine and minding my mental health - even now I still attend regular sessions with a psychotherapist to help me live with this disease - so it was so difficult to have my symptoms constantly dismissed during this period (my therapist even said the way I was treated by the psych team in hosp and some of the questions asked were totally unethical- she was horrified). It has left me with a huge mistrust of the system as this is not the only time I have experienced gaslighting. One doctor when I moved countries wouldn’t look at any of my old MRIs only the one she’d just done and told me I didn’t have MS at all and it was all in my head.
I am lucky that my main consultant in Ireland is kind and listens to his patients even if he is operating in a system that doesn’t, and I have also found a wonderful consultant here in Germany too (I live between the two countries). I have had to learn to trust my own body and at every stage have fought for what I know my body needs. It hasn’t been easy though and when I chat to others with MS to find we have all experienced gaslighting at some stage (even more so in those of us who are female) it makes me angry that in 2021 many doctors still refuse to listen to their patients’ lived experiences of this disease. Apologies again for a long reply but this topic is something I am very passionate about and I’m one of the lucky ones who has a consultant who acknowledges smouldering MS and listens - many sadly do not.
Prof G, can you comment on how much of an add-on effect you think lifestyle changes (mainly exercise) have on brain atrophy? Do you think an intensive exercise program on top of a high-efficacy DMT is enough to normalize brain atrophy?
Thanks for this excellent podcast and article. It absolutely makes sense. Last year I developed the MS hug for the first time, but I was told it was not a relapse because my scans were stable. I felt it was likely further demyelination in my spinal cord where I already have a lesion at T4. I also seem to have deteriorated over the last 12 months even though my MR scans show no new lesions. Hoping switching onto Ocrelizumab is going to help.
Same here. No evidence of new lessions on my MRIs for the past 7 years but my MS is slowly advancing year by year. Currently I'm trying to develop and accept my role as a vegetable, I kinda lost hope.
I'm sure I have a simplistic view of things but if one were to be diagnosed with Systemic lupus erythematosus It is possible to suffer with quite serious Neurological symptoms without there being any lesions visible on MRI but it is a recognised symptom of systemic inflammation and surely if Multiple sclerosis is fundamentally an inflammatory condition then the lack of MRI lesions wouldn't necessarily mean a person wasn't suffering from a relapse I personally have a dual diagnosis of Antiphospholipid syndrome and Multiple sclerosis so have one foot in Rheumatology and the other in Neurology and it is difficult sometimes to know where one begins and the other ends as there is a lot of overlap
Hi Prof G, thanks for this case study. What would your advice be to this patient, would AHSCT offer the best possible outcome?
Absolutely agree! Over the years on Tysabri I have had several episodes lasting many weeks which I believe to be relapses - mainly spinal cord. MRI doesn’t pick them up! I definitely feel I’m worse. I’ve always believed MS smoulders away under the surface.
Prof G, is there a way to consult online particular case with you?
Prof G - could you pls reinstate my subscription?
From a patient perspective, what can be done to this patient after she failed Alemtuzumab and Ocrelizumab may not be fully controlling the disease?
7 years ago I started with symptoms of severe headaches, started losing color and then vision in right eye, balance issues, vertigo. Was in OU medical hospital for 8 days spinal taps mri, CT scan showed nothing. Took 4 months get get eye sight back. I did not get diagnosed till Feb 2020. Not on MS meds my neurologist does not want my immune system compromised. She said because I am 65 years old. She usually takes her patients off meds at 65. I am doing good with diet and exercise. I believe a new protocol needs to be developed for MS dignosis.
100000% ignored - I am lumped in the CIS group mentioned that experiences PIRA with optic neuritis and one juxtacortical lesion on Tysabri for a year with progressive worsening of symptoms and no MRI changes so zero entertainment of switching DMT or steroid treatment even though I am mounting disability progression.
So often i feel like I am being gas lighted by my care team when I report symptoms / flares. I would much prefer a realistic and evidence based answer I.e you may be progressing, we are doing everything we can right now to slow the progression and reduce the inflammation, there is still much to learn, instead I get ‘oh that doesn’t sound like an ms symptom’ or ‘I too have to be so careful with my fluid intake and what I wear on my feet’. I really hope others have more empathetic responses which validate their experience
I completely agree. MRI scans are completely inaccurate with MS. The reading of them is also very subjective, different radiographers have reported differently with my scans and the appearance varies when different strength scanners are used. Neurologists don’t always do MRI scans on the spine, even when it is indicated by the symptoms of a relapse. It was this that meant that I couldn’t get HSCT on the NHS and had to pay privately to have it done abroad. I had RRMS and have now been in remission nearly three years.