Since having COVID-19 in 2021, my cognitive function has plummeted. Is there anything I can do about my cognition? My neurologist has told me this is what happens when you have MS and get old.
I have not had cognitive screening. 63 yrs old RRMS probably for 35yrs Diagnosed 2 years ago. Self assessed EDSS ~ 3. Current symptoms invisible: cognitive, fatigue, urinary symptoms. Last MRI "radiologically" stable. On no DMT. Recent discussion with neurologist "not appropriate as side effects in older people more dangerous than likely progress of disease" He does say my condition will worsen.
Asking directly about cognitive function I get mixed messages. "you've had a good life, don't think about it, that will make it worse". "You do not need to have testing you can map out your deficits your self." I am a retired psychiatrist not a psychologist. I think it is unreasonable (and ineffectual) to expect me to do my own testing. On presentation when it was thought that I'd had a stroke junior doctor administered half of a Mini Mental State Examination badly on me. I did fine, but as it is a very blunt instrument and as I have carried it out on patients many times over the years I can do the answers in my sleep! Neurologist seemed to suggest cognitive decline should not concern me as I am retired. Actually he made reference to the fact that an eg farmer should not be bothered by cognitive decline but an eg software. programmer would be entitled to be distressed!!! I asked directly about atrophy and his wording was "I do not see anything to be worried about there."
I have always been very physically active and hope to be able to continue be so but I do value my cognitive function more.
Btw, over the years fatigue and brain fog were diagnosed as mild anxiety/depression. In retrospect I think much of this was actually MS activity or a reaction to my other MS symptoms so it works both ways.
“Existential neurology”? See also- “years of education…reduced the severity of MS” in a genetic article (https://multiple-sclerosis-research.org/2023/10/genes-controlling-severity/) recently cited in Bart’s MS Blog (apparently an accidental finding). I’m a psychologist, not a psychiatrist. Not nearly as sharp as my earlier years but still pretty good; better than many of my older peers who are not aware of any illness. Best to you.
Ah I now wish I done an intercalated degree and an MD for good measure. Did try learning a new language the year before diagnosis... still can't count to ten in Gaelic yet. I wonder if they can look at sense of humour in resilience in MS. I can't see how that would work neurologically but it certainly seems to help.
Completely agree. My sister lost her humour. She died with this disease aged 63. She lost interest in life & her humour, probably around 60. Diagnosed late and took every med offered. I’m the opposite. Question everything, and try to embrace life.
Thank you for this very important post that touches home.
I'm 64 years old, living with MS since 1986. I've noticed a steady decline in cognition over the last few years. It's as if there's translucent material blocking my thoughts. I have a difficult time finding words or remembering names/events. It's hard to process reading materials - I have to read things twice. I had cognitive testing done last year and the results stated I had no cognitive dysfunction! (My husband can testify how hard it's been for me) I read voraciously, do puzzles, etc. BTW I'm currently on Ocrevus. Any thoughts/comments would be appreciated. Thank you. Cathy Chester
Cathy, that is well put - translucence blocking thoughts…perhaps you’re very high functioning compared to general population to be considered fine on test? Btw, I began to have word retrieval issues with baclofen after perhaps 25 years. Just a thought. (I still have some..)🌷
This is interesting stuff, but sounds as if it's coming from another planet. There are parts of the UK where people are waiting well over a year for a first appointment with a Consultant Neurologist, for heaven's sake. (Here's one, and there may be others for all I know. https://datavis.nisra.gov.uk/health/ni-outpatient-waiting-times-jun-23.html). Here in the real world, that's what people are dealing with. We all wish it were otherwise, but it isn't.
I'm 61 and my MS is very well-controlled with Tysabri and has been for years, but I've got awfully stupid too and really feel for the person asking the question because I get it. And yes, I ought to ask my Consultant Neurologist. Who knows? I might be pleasantly surprised by his response. But I'm not very hopeful.
I am fully aware of this which is why I make the point we have no bandwidth in the NHS for Brain Health preventive neurology. But that is no reason not to aim high. We should aspire to do the best we can for people living with MS.
Yes, I know that you share patients' frustration with this. And it is good that you and others continue to develop best practice, if only to point up how hilariously/disgracefully big is the gap between that and the sad reality. Thank you for that. That is important work, however much it must sometimes feel to you that you are wasting your sweetness on the desert air. It gives us all hope.
I have had cognitive screening. About 12 years ago. Some lower scores but not awful. I’m now 62 and my cognitive exhaustion kicks in quickly. I’ve asked for another assessment and been given some psychological therapy. I feel I was deterred from another assessment. Given the Alzheimer’s and MS in my family I don’t feel listened to on this subject. Potentially I have low grade depression. I had a difficult pandemic with the loss of my father to Covid and a sister (not Covid). I have caring responsibilities for elderly mother. As in, checking on her care and well being. I can’t physically help. I don’t want anti depressants as I’ve had them in the past and get side effects. I spend a lot of time making sure my diet and mental health needs are met. That in itself can be exhausting. I think since Covid help for MSers like myself is minimal.
Do you think the (i know its limited but it exists) evidence on simvastastin and brain atrophy in people with ms is worthless? theres a poster about this in neurology institute next to queens square, it has a sample population with secondary ms -but it mentions other ms too.
more generally, i also think that the attitudes about old-people-should-just-get-on-and-die discussed in the uk covid enquiry is widespread - its not just Johnson's lot think this
Let's wait for the STAT-2 or phase 3 simvastatin in MS trial before making a call on the effectiveness of this therapy in MS. Yes, in the phase 2 trial there was a small impact on BVL compared to placebo, but whether this effect is clinically meaningful requires a phase 3 trial.
On post-covid cognitive issues. Definitely also ask about sleep because covid is also a sleep disrupter. My experience - 10 months of neuro PASC after last infection. I was post Mavenclad treatment and declined quickly and had a new primary hypothalamic headache unrelated to MS, and SIGNIFICANT (dementia like) cognitive issues.
First improvement when I restarted valacyclovir. It is known now that covid can reactivate latent virus and when older, our immune systems may not be able to keep them in check. Most of the fatigue and balance trouble resolved at this point.
MS also reactivated, and I ended up starting on Kesimpta 9 months post infection, and now feel amazing. Interestingly and possibly coincidentally, the ten month headache resolved completely by just after month 1 injection.
As long as I get a good night sleep now, my brain and cognition are clear AND post-Kesimpta, can now read and understand and enjoy fiction for the first time since 2014.
I have not have Covid, but after being told I was stable with neid 6 years ago (you can stop your DMD!) cognitive issues have gone downhill. I have never been offered cognitive testing. Ever. Due to my age (70, diagnosed at 42) I cannot get a DMD. I am in the states and am backing off of most medications because I’m literally tired of them. It’s polypharmacy! So I do wonder about depression. EDSS 6, tremor, spasms and ongoing UTIs. There’s always something. I don’t know if anyone else has ongoing vertigo and dizziness. (I call the feeling “the limping undead”.) I’ve had some of this from sudden deafness in 2003, some from migraine and some from MS, but there is no consensus. I just haven’t found neurologists willing to do much but throw meds (excepting DMDs) at my condition at my age. My balance, tremor and eyesight alone leave me unable to function properly and use a computer or TV screen. After I resolve the latest UTI madness (urethral diverticulum! More fun!), I am being referred to the balance clinic at a Los Angeles university hospital and work from there. Their reputation is very good and may just get me to someone who deals with MS at my age who doesn’t just say suck it up, you’re old.
Given the current state of the NHS and the delays in neurological treatment, this is very interesting, but highly unlikely to happen in the UK. All appointments and treatments are severely delayed. I was supposed to start Mavenclad in May, but it's now going to be December. More blood tests now required as the 3 month window has passed.
Cognitive decline is NEVER discussed at my appointments. I did ask my previous dinosaur neurologist about brain atrophy on my MRI and he gaslit me. I sacked him & transferred to a younger, female neurologist. She's wonderful, but has the usual NHS time constraints.
I'm very aware of cognitive decline. It's why I had to retire aged 34 in the days before any DMTs. I could no longer read and concentrate for the 12/13 hour days required.
All we can do is eat healthily, consider keto diet and fasting and exercise within our abilities. And try to avoid repeat Covid infections which might reactivate EBV.
I'm not sure that daily word and maths puzzles will stop complete deterioration, but I'll keep doing them.
I do the same but also read challenging material for me. I’m reading (do t laugh) Neurology for Dummies. I was a business major and worked as a CPA (I think it’s called a chartered Accountant in the UK). It’s definitely outside my wheelhouse. I think I’m going to start taking Spanish via Babbel, too. Work it!
I'm 59 and not quite 2 yrs post diagnosis. Had been very stable with mild sensory, bladder and bowel changes and slight left leg weakness. Then I contacted covid in June this year and over the last 16 weeks have suffered significant cognition issues. I used to engage in conversations enthusiastically but now find myself remaining quiet in social situations due to not being able/too mentally fatigued to engage. Both legs are also much worse with cramping and fatigue but most concerning is my arms becoming noticeably heavy.
I switched from Kesimpta to Tysabri one year ago and have some valacyclovir left over from that transition so have begun taking that again to eliminate the possibility of an opportunistic resurgence of Zoster. As Prof G says there is evidence of covid virus potentially smouldering in the brain which seems to explain my sudden decline.
My question is what if any anti virals may address this issue. Can the existing anti virals cross the blood brain barrier?
I don’t recall any type of brain evaluation; only MRI evaluations. I’ve been on anticholinergics for many years and wonder if I could get by without them. I have a follow up appointment with my neurologist’s APRN (advance practice registered nurse) in a few weeks and intend to ask her about this. I have been having a great reduction in my physical function and my APRN told me that this was very unusual after age 60 (I’m 63). My physical function has resulted in a huge increase in spasticity unlike anything I’ve ever experienced. My left leg began rising up on its own and eventually I began to have very intense and painful spasms in it. Soon I had them in my right leg as well. Next I was prescribed carbamazepine followed by clonazepam. These helped somewhat with the pain and spasms. My APRN added tizanidine and increased the dosage of the clonazepam. This has helped with sleep at night, but i still wake up with a very stiff left leg. It generally remains in a 90 degree angle. Any ideas, Sir?
Can I ask do you drive on these meds ? I stopped my meds and put up with pain and spasms because of DVLA issues with licence. If I can’t drive my life will be so small at 62.
I understand completely. I stopped driving about 7 months ago. I just noticed some changes that scared me and I didn’t want to hurt anyone or myself. I had a urologist whose staff member tried to teach me how to self-catheterize; i never got the hang of it and packed away the catheters. My daughter is an RN and has done labor and delivery her entire career doing so. My husband is a very caring man. So my daughter taught him how to cath me. It makes a HUGE difference. I have not given up my driver’s license but I doubt I will drive again. Are you in the US? If so, look into an organization called Nabor.
I’m UK. Due to MS I was having 3 yearly reviews. I was then stopped from driving as I told the Driving Licence organisation I sometimes took Sativex at night. They revoked my licence. So I stopped all the meds and have licence now annually. I didn’t drive if I felt unsafe. Now I’m thinking I may move house, less rural as this could be a future problem.
Thank you, Dr. G.! I take a "marginal gains" approach to my brain health, and I think it has done wonders for me. I had a relapse recently, which has set me back physically, but cognitively I feel on-going improvement. I wish my neuro would discuss this with me. Thank you for the encourging words, Dr. G.!
Hypercalcaemia is known to cause neuropsychiatric dysfunction. In mild cases, patients may present with anxiety, depression, and cognitive changes, while altered mental status, psychosis, confusion, lethargy, and coma hallmark severe hypercalcaemia.
Contrary to the dogma vitamin D supplementation does not cause hypercalcaemia. The latter only occurs when it is taken with high dose calcium or in the presence of granulomatous disorders, such as TB, sarcoidosis and berylliosis.
My doctor told me to stop taking calcium supplements after she put me on various treatments for osteoporosis. (This was my endocrinologist.) I do take vitamin D supplements.
I have not had cognitive screening. 63 yrs old RRMS probably for 35yrs Diagnosed 2 years ago. Self assessed EDSS ~ 3. Current symptoms invisible: cognitive, fatigue, urinary symptoms. Last MRI "radiologically" stable. On no DMT. Recent discussion with neurologist "not appropriate as side effects in older people more dangerous than likely progress of disease" He does say my condition will worsen.
Asking directly about cognitive function I get mixed messages. "you've had a good life, don't think about it, that will make it worse". "You do not need to have testing you can map out your deficits your self." I am a retired psychiatrist not a psychologist. I think it is unreasonable (and ineffectual) to expect me to do my own testing. On presentation when it was thought that I'd had a stroke junior doctor administered half of a Mini Mental State Examination badly on me. I did fine, but as it is a very blunt instrument and as I have carried it out on patients many times over the years I can do the answers in my sleep! Neurologist seemed to suggest cognitive decline should not concern me as I am retired. Actually he made reference to the fact that an eg farmer should not be bothered by cognitive decline but an eg software. programmer would be entitled to be distressed!!! I asked directly about atrophy and his wording was "I do not see anything to be worried about there."
I have always been very physically active and hope to be able to continue be so but I do value my cognitive function more.
Btw, over the years fatigue and brain fog were diagnosed as mild anxiety/depression. In retrospect I think much of this was actually MS activity or a reaction to my other MS symptoms so it works both ways.
Gas Lighting in capital letters. Shake head in despair.
I do!
I don’t understand this comment at all.
Joan, Basically in the same boat in so many ways. And rowing nowhere. Retired litigator. That quick thinking has left the building.
“Existential neurology”? See also- “years of education…reduced the severity of MS” in a genetic article (https://multiple-sclerosis-research.org/2023/10/genes-controlling-severity/) recently cited in Bart’s MS Blog (apparently an accidental finding). I’m a psychologist, not a psychiatrist. Not nearly as sharp as my earlier years but still pretty good; better than many of my older peers who are not aware of any illness. Best to you.
Ah I now wish I done an intercalated degree and an MD for good measure. Did try learning a new language the year before diagnosis... still can't count to ten in Gaelic yet. I wonder if they can look at sense of humour in resilience in MS. I can't see how that would work neurologically but it certainly seems to help.
Completely agree. My sister lost her humour. She died with this disease aged 63. She lost interest in life & her humour, probably around 60. Diagnosed late and took every med offered. I’m the opposite. Question everything, and try to embrace life.
Thank you for this very important post that touches home.
I'm 64 years old, living with MS since 1986. I've noticed a steady decline in cognition over the last few years. It's as if there's translucent material blocking my thoughts. I have a difficult time finding words or remembering names/events. It's hard to process reading materials - I have to read things twice. I had cognitive testing done last year and the results stated I had no cognitive dysfunction! (My husband can testify how hard it's been for me) I read voraciously, do puzzles, etc. BTW I'm currently on Ocrevus. Any thoughts/comments would be appreciated. Thank you. Cathy Chester
Cathy, that is well put - translucence blocking thoughts…perhaps you’re very high functioning compared to general population to be considered fine on test? Btw, I began to have word retrieval issues with baclofen after perhaps 25 years. Just a thought. (I still have some..)🌷
G, that’s what I’m wondering. Are you too high functioning for the test(s)?🌷
This is interesting stuff, but sounds as if it's coming from another planet. There are parts of the UK where people are waiting well over a year for a first appointment with a Consultant Neurologist, for heaven's sake. (Here's one, and there may be others for all I know. https://datavis.nisra.gov.uk/health/ni-outpatient-waiting-times-jun-23.html). Here in the real world, that's what people are dealing with. We all wish it were otherwise, but it isn't.
I'm 61 and my MS is very well-controlled with Tysabri and has been for years, but I've got awfully stupid too and really feel for the person asking the question because I get it. And yes, I ought to ask my Consultant Neurologist. Who knows? I might be pleasantly surprised by his response. But I'm not very hopeful.
I am fully aware of this which is why I make the point we have no bandwidth in the NHS for Brain Health preventive neurology. But that is no reason not to aim high. We should aspire to do the best we can for people living with MS.
Yes, I know that you share patients' frustration with this. And it is good that you and others continue to develop best practice, if only to point up how hilariously/disgracefully big is the gap between that and the sad reality. Thank you for that. That is important work, however much it must sometimes feel to you that you are wasting your sweetness on the desert air. It gives us all hope.
I have had cognitive screening. About 12 years ago. Some lower scores but not awful. I’m now 62 and my cognitive exhaustion kicks in quickly. I’ve asked for another assessment and been given some psychological therapy. I feel I was deterred from another assessment. Given the Alzheimer’s and MS in my family I don’t feel listened to on this subject. Potentially I have low grade depression. I had a difficult pandemic with the loss of my father to Covid and a sister (not Covid). I have caring responsibilities for elderly mother. As in, checking on her care and well being. I can’t physically help. I don’t want anti depressants as I’ve had them in the past and get side effects. I spend a lot of time making sure my diet and mental health needs are met. That in itself can be exhausting. I think since Covid help for MSers like myself is minimal.
Do you think the (i know its limited but it exists) evidence on simvastastin and brain atrophy in people with ms is worthless? theres a poster about this in neurology institute next to queens square, it has a sample population with secondary ms -but it mentions other ms too.
more generally, i also think that the attitudes about old-people-should-just-get-on-and-die discussed in the uk covid enquiry is widespread - its not just Johnson's lot think this
Let's wait for the STAT-2 or phase 3 simvastatin in MS trial before making a call on the effectiveness of this therapy in MS. Yes, in the phase 2 trial there was a small impact on BVL compared to placebo, but whether this effect is clinically meaningful requires a phase 3 trial.
Phase 3 results due in 2024?
Yes, next year.
I have read multiple articles that stated statins were thought to HELP MS! When did this change?
On post-covid cognitive issues. Definitely also ask about sleep because covid is also a sleep disrupter. My experience - 10 months of neuro PASC after last infection. I was post Mavenclad treatment and declined quickly and had a new primary hypothalamic headache unrelated to MS, and SIGNIFICANT (dementia like) cognitive issues.
https://www.biorxiv.org/content/10.1101/2023.10.19.563117v1
First improvement when I restarted valacyclovir. It is known now that covid can reactivate latent virus and when older, our immune systems may not be able to keep them in check. Most of the fatigue and balance trouble resolved at this point.
MS also reactivated, and I ended up starting on Kesimpta 9 months post infection, and now feel amazing. Interestingly and possibly coincidentally, the ten month headache resolved completely by just after month 1 injection.
As long as I get a good night sleep now, my brain and cognition are clear AND post-Kesimpta, can now read and understand and enjoy fiction for the first time since 2014.
I have not have Covid, but after being told I was stable with neid 6 years ago (you can stop your DMD!) cognitive issues have gone downhill. I have never been offered cognitive testing. Ever. Due to my age (70, diagnosed at 42) I cannot get a DMD. I am in the states and am backing off of most medications because I’m literally tired of them. It’s polypharmacy! So I do wonder about depression. EDSS 6, tremor, spasms and ongoing UTIs. There’s always something. I don’t know if anyone else has ongoing vertigo and dizziness. (I call the feeling “the limping undead”.) I’ve had some of this from sudden deafness in 2003, some from migraine and some from MS, but there is no consensus. I just haven’t found neurologists willing to do much but throw meds (excepting DMDs) at my condition at my age. My balance, tremor and eyesight alone leave me unable to function properly and use a computer or TV screen. After I resolve the latest UTI madness (urethral diverticulum! More fun!), I am being referred to the balance clinic at a Los Angeles university hospital and work from there. Their reputation is very good and may just get me to someone who deals with MS at my age who doesn’t just say suck it up, you’re old.
Given the current state of the NHS and the delays in neurological treatment, this is very interesting, but highly unlikely to happen in the UK. All appointments and treatments are severely delayed. I was supposed to start Mavenclad in May, but it's now going to be December. More blood tests now required as the 3 month window has passed.
Cognitive decline is NEVER discussed at my appointments. I did ask my previous dinosaur neurologist about brain atrophy on my MRI and he gaslit me. I sacked him & transferred to a younger, female neurologist. She's wonderful, but has the usual NHS time constraints.
I'm very aware of cognitive decline. It's why I had to retire aged 34 in the days before any DMTs. I could no longer read and concentrate for the 12/13 hour days required.
All we can do is eat healthily, consider keto diet and fasting and exercise within our abilities. And try to avoid repeat Covid infections which might reactivate EBV.
I'm not sure that daily word and maths puzzles will stop complete deterioration, but I'll keep doing them.
I do the same but also read challenging material for me. I’m reading (do t laugh) Neurology for Dummies. I was a business major and worked as a CPA (I think it’s called a chartered Accountant in the UK). It’s definitely outside my wheelhouse. I think I’m going to start taking Spanish via Babbel, too. Work it!
I'm 59 and not quite 2 yrs post diagnosis. Had been very stable with mild sensory, bladder and bowel changes and slight left leg weakness. Then I contacted covid in June this year and over the last 16 weeks have suffered significant cognition issues. I used to engage in conversations enthusiastically but now find myself remaining quiet in social situations due to not being able/too mentally fatigued to engage. Both legs are also much worse with cramping and fatigue but most concerning is my arms becoming noticeably heavy.
I switched from Kesimpta to Tysabri one year ago and have some valacyclovir left over from that transition so have begun taking that again to eliminate the possibility of an opportunistic resurgence of Zoster. As Prof G says there is evidence of covid virus potentially smouldering in the brain which seems to explain my sudden decline.
My question is what if any anti virals may address this issue. Can the existing anti virals cross the blood brain barrier?
I don’t recall any type of brain evaluation; only MRI evaluations. I’ve been on anticholinergics for many years and wonder if I could get by without them. I have a follow up appointment with my neurologist’s APRN (advance practice registered nurse) in a few weeks and intend to ask her about this. I have been having a great reduction in my physical function and my APRN told me that this was very unusual after age 60 (I’m 63). My physical function has resulted in a huge increase in spasticity unlike anything I’ve ever experienced. My left leg began rising up on its own and eventually I began to have very intense and painful spasms in it. Soon I had them in my right leg as well. Next I was prescribed carbamazepine followed by clonazepam. These helped somewhat with the pain and spasms. My APRN added tizanidine and increased the dosage of the clonazepam. This has helped with sleep at night, but i still wake up with a very stiff left leg. It generally remains in a 90 degree angle. Any ideas, Sir?
Can I ask do you drive on these meds ? I stopped my meds and put up with pain and spasms because of DVLA issues with licence. If I can’t drive my life will be so small at 62.
I understand completely. I stopped driving about 7 months ago. I just noticed some changes that scared me and I didn’t want to hurt anyone or myself. I had a urologist whose staff member tried to teach me how to self-catheterize; i never got the hang of it and packed away the catheters. My daughter is an RN and has done labor and delivery her entire career doing so. My husband is a very caring man. So my daughter taught him how to cath me. It makes a HUGE difference. I have not given up my driver’s license but I doubt I will drive again. Are you in the US? If so, look into an organization called Nabor.
I’m UK. Due to MS I was having 3 yearly reviews. I was then stopped from driving as I told the Driving Licence organisation I sometimes took Sativex at night. They revoked my licence. So I stopped all the meds and have licence now annually. I didn’t drive if I felt unsafe. Now I’m thinking I may move house, less rural as this could be a future problem.
Does the Sativex help? We basically can’t get it here. Super anti cannabis anything dating back generations.
Thank you, Dr. G.! I take a "marginal gains" approach to my brain health, and I think it has done wonders for me. I had a relapse recently, which has set me back physically, but cognitively I feel on-going improvement. I wish my neuro would discuss this with me. Thank you for the encourging words, Dr. G.!
Thank you for the holistic approach (again).
I'm curious about the link with hypercalcemia.
Could you elaborate on the link with cognitive decline?
Especially given that most pwMS are taking vitamin D suppletion.
Hypercalcaemia is known to cause neuropsychiatric dysfunction. In mild cases, patients may present with anxiety, depression, and cognitive changes, while altered mental status, psychosis, confusion, lethargy, and coma hallmark severe hypercalcaemia.
Contrary to the dogma vitamin D supplementation does not cause hypercalcaemia. The latter only occurs when it is taken with high dose calcium or in the presence of granulomatous disorders, such as TB, sarcoidosis and berylliosis.
My doctor told me to stop taking calcium supplements after she put me on various treatments for osteoporosis. (This was my endocrinologist.) I do take vitamin D supplements.
very interesting - thank you for the elaboration