Email: "Is 200 brains a large enough number to conclude that MS and Alzheimer's do not happen together?"
Yes, based on the age of the patients, I.e. the majority were over 50 with many in their 60s we would have expected ~20-30% of them to have early AZD pathology.
I tried doing the maths on this and initially thought 2:200 pwMS would also develop Alzheimer’s disease, but it’s far more complicated than that. Both conditions have increased prevalence with age. Both conditions shorten lifespan. Even where RRMS is reported not to shorten life expectancy, when RRMS gets bad enough to shorten life expectancy it gets retitled SPMS, messing all the numbers up. The two features of brain biopsy in Alzheimer’s are beta pleated amyloid sheets and neurofibrillary tangles. Alzheimer’s research is still undecided whether these are the cause of or consequence of Alzheimer’s, so even if absent, it doesn’t help one way or another because you don’t know if MS or it’s treatment has prevented the Alzheimer’s disease, or just the histopathological features. Logically, MS causes brain volume loss and a good cerebral reserve is protective in all kinds of dementia, so MS neuronal loss should accelerate Alzheimer’s if they were to coincide. Even if you were to know the answer, without subgroup analysis you wouldn’t know if if it was therapy or disease driving any difference. New Alzheimer’s drugs, preventing the formation of the biopsy features, results were clinically disappointing.
All the Queen Square brain bank cases were from the pre-DMT era. Therefore, this observation is likely to be out of date. I have been in the field for 30+ years and have yet to diagnose AZD in someone with pre-existing MS. I suspect this may simply because MS causes a dementia and hence it is labelled as MS dementia instead of AZD. On the other side of the coin I have seen multi-infarct dementia in pwMS. Clearly more work needs to be done to resolve this issue. All I was pointing out that is using new biomarkers for AZD pathology it looks like pwMS are reduced risk of getting AZD. I find this interesting.
Ask Grok: How does the cognitive impairment associated with multiple sclerosis differ from that associated with Alzheimer's disease?
Grok's Response
Multiple Sclerosis (MS) and Alzheimer's disease both affect cognitive functions, but they do so in distinct ways due to their different pathologies:
**Multiple Sclerosis (MS):**
- **Pathology**: MS is an autoimmune disease where the immune system attacks the myelin sheath, the protective covering of nerve fibers in the brain and spinal cord. This leads to lesions or scars (sclerosis) that disrupt the transmission of nerve impulses.
- **Cognitive Impairment**:
- **Type**: MS often leads to what is known as "mild cognitive impairment" in many patients. This impairment can affect information processing speed, attention, executive functions (like planning and problem-solving), and memory, particularly short-term memory.
- **Pattern**: The cognitive deficits in MS can be inconsistent, with good days and bad days. This variability is often due to the fluctuating nature of the disease, where new lesions can temporarily or permanently affect cognitive functions.
- **Progression**: Cognitive decline in MS might not follow a predictable pattern. Some individuals might experience significant cognitive issues early on, while others might never develop noticeable cognitive impairments.
- **Emotional Impact**: MS can also lead to emotional changes, which might be mistaken for cognitive issues, like mood swings or depression, which can further impact cognitive performance.
**Alzheimer's Disease:**
- **Pathology**: Alzheimer's is characterized by the accumulation of amyloid plaques and tau protein tangles in the brain, leading to the death of neurons and loss of brain tissue over time.
- **Cognitive Impairment**:
- **Type**: Alzheimer's primarily affects memory, especially episodic memory (memory of events and experiences). As the disease progresses, it impacts other cognitive functions like language, spatial abilities, and judgment.
- **Pattern**: The progression is generally more predictable, starting with forgetfulness of recent events and gradually affecting older memories and other cognitive domains. There's a steady decline in cognitive abilities over time.
- **Progression**: Alzheimer's follows a more linear path of deterioration, with stages from mild cognitive impairment to severe dementia where individuals lose most cognitive functions.
- **Emotional and Behavioral Changes**: Alzheimer's can also lead to personality changes, delusions, and agitation, which are often more pronounced in the later stages.
**Key Differences**:
- **Nature of Impairment**: MS often leads to a patchy, inconsistent cognitive impairment where certain cognitive functions might remain relatively intact, while others fluctuate. Alzheimer's, however, typically starts with memory loss and progresses to a broad cognitive decline.
- **Pathological Basis**: MS's cognitive issues stem from demyelination and lesions, which can be widespread but are not uniformly degenerative like the neuron loss in Alzheimer's.
- **Prognosis and Progression**: MS can have periods of remission where cognitive function might improve, whereas Alzheimer's disease is relentlessly progressive with no remission.
- **Diagnosis and Management**: While both conditions can be diagnosed through a combination of clinical evaluation, imaging, and cognitive testing, the approach to management differs significantly, focusing on symptom management and disease-modifying therapies for MS, and symptomatic relief, cognitive training, and eventually palliative care for Alzheimer's.
Understanding these differences is crucial for proper diagnosis, management, and support for individuals affected by these conditions.
I have had worsening for sure as I have told you before. The neuro’s just dismiss it as anxiety and not ms. They won’t talk about it. If it’s not on that dam MacDonald criteria or edss then they don’t accept it as ms - where as every article we read says these symptoms are common with ms
My cognitive abilities have taken a hit lately, with a decreased ability to remember things and a feeling of general slippage. I've also lost my creative spark. It's frustrating. Not sure if this is because I also live with MS induced depression or if I'm just old and tired.
It is hard to know, indeed. Re the creative spark: there just doesn’t seem to be enough time either with this flipping fatigue. I am trying to write down everything I possibly can!
Cognitive impairment is far and away my worst MS symptom. I worked in a high-paced, high-functioning career when I was diagnosed back in 2004, which was prior to the dawn of decent dmts. I'd also had MS for many years pre-diagnosis, so once the relapse ball really got rolling it was hard to contain the damage. I ended up off work permanently in 2005 due to cognitive impairment. I was only 33.
At the time, I went through a full battery of cognitive testing. If I remember correctly, it took many, many hours and was incredibly taxing (pasat test, anyone? lol).
Unfortunately, since then I have sort of fallen through the cracks when it comes to any sort of follow up for these issues. My career was written off, I was sent a report of the findings of my testing and that was sort of the end of the matter. Now I'm left to sink or swim in my own set of routines and coping strategies. I know our healthcare system is overwhelmed, so I'm ok with this, but it does feel a bit lonely and unsupported at times.
I'll be 52 in a week or so and it's comforting to know that I can likely cross AZD off the list as a potential concern.
Cognitive are my worst symptoms. I have drastically reduced the amount of fiction I read because I don’t retain plot developments or characters. I am much less effective in managing my tasks. Organizing lodging for a June wedding for my large family was a Herculean task, and 10 years ago it would have been no big deal.
The depression is a real bummer (ha ha). It’s a weird kind of depression: not a steady hum of melancholy (as I had when dealing with a boatload of life events as a young adult), but a greatly variable state. Feels a tad bipolar, only in the lability.
I asked my neuro if pwMS have more depression because the loss of function is distressing, and she said yes, AND that MS causes structural changes in the brain that cause depression. A double whammy! I appreciated her letting me know this. It’s the kind of info that could cause one to give up: depression is now hard-wired into my brain, there’s no beating it.
But although at least half my days feel Sisyphean (life is a slog!), I still believe (wrongly!?) that it could improve and is worth trying.
I will get a cog eval in Nov: my neuro wanted me to wait at least that long after the January Dx (PPMS) to let me settle with the diagnosis.
PS: Dr. G, your answer to this Q about MS and Alzheimer is reassuring to me. I HAVE fretted, should I look into AD too, as part of my coping-through-studying strategy? This post suggests I needn’t add it to the mix. Thank you!
Please see comment above about the QS observation being in the pre-DMT era and hence we need new data to confirm this. But I agree the overall picture is consistent with a lower risk of AZD in pwMS.
Other types of dementia are available. Alzheimer’s accounts for about 60-70% cerebrovascular 15%. What are your thoughts on comorbidity of cerebrovasular disease and MS. I imagine it mght be more than the normal population. My diagnosis of MS was made during COVID when MRI scan was not readily available. Thinking that a stroke was possible I had a CT scan that suggested small vessel disease. An MRI later pointed to inflammatory disease, and I did have a history of symptoms compatible over the years leading up to this. I still wonder about the differential diagnosis as I had no spinal lesions or oligoclonal bands.
Since this last episode cognitive problems have been more problematic with word finding, attention and problem-solving difficulties especially when fatigued. Maybe taking about 3 times as long to write this comment than I would have before, and I’ve shot over to WORD to spell and grammar check
MS consultant told me “well, you don’t have a normal brain and suggested trying to forget about it and get on with life. He has also suggested that as I’m a retired psychiatrist I could map out my own deficits. (really needs a psychologist or neuropsychologist with specific resources and training). When I asked him about brain atrophy, he quickly looked at my MRI and said he didn’t see anything particularly worrying.
Strange attitude from my Consultant. “Some people don’t need to worry so much about cognitive function (alluding to the fact that I am retired perhaps) and, sorry to any farmers out there, suggested that a farmer would not need not worry about cognitive function but a software developer would.
Reasons I’ve had worsening cognition - or cognitive FATIGUE which is slightly different:
1. Sleep deprivation. Per all my sleep doctors, sleep fragmentation for any reason is neurologically devastating. Absolutely hammers at cognition.
2. Untreated thyroid. But my TSH was low for a long time despite T3 and T4 also being low. So not treated.
3. Low cortisol. The older pwMS may find cortisol low normal and it can be sleep disruptive just like high cortisol - and melatonin or magnesium before bed will make sleep worse. Less sleep - poorer cognition.
4. EBV reactivation - incredible cognitive fatigue. As well as motor and general fatigue. I can’t do simply math calculations (adding and subtracting or multiplying numbers 10) in my head when reactivated which is horrifying.
5. Spasticity and spasms before they were managed. Again, sleep disruptive. So many of our cognition reducing issues are due to sleep deprivation.
6. Mixed apnea. Every person with MS - even if they don’t snore! - needs a sleep study.
I have struggled severely with cognition but thankfully it’s all been due to manageable conditions, not directly due to MS.
I’m grateful to work with a naturopathic doctor who has helped me figure out the problems. My gps and even MS neuro are quick to label cognition “just MS”.
About two years before MS diagnosis I was sent for neuropsychological evaluation and testing at age 55. I was having trouble concentrating and word finding. Also I couldn’t figure out how to open my granddaughter’s stroller. I might as well have flown the space shuttle than to open that stroller LOL
The results of testing were mild cognitive impairment. Since then, over the years, being able to multitask and plan things along with short term memory have been an issue. Again went to a different neuropsychologist two years ago that’s at my MS neuro and I’m still in the mild cognitive impairment range.
I’ve had what I call low-grade depression most of my life, anxiety.
And bad panic attacks when I was younger. Most prominent now are mood swings. Now I’m 69 and I keep a daily journal and make “to do” lists. Which help me handle daily life better.
Thank you for raising this pertinent topic Prof G. Coincidentally, I was discussing this with my Neurologist only last week at our annual appointment.
To give context: my father sadly passed from Early Onset Alzheimer's disease in January of this year. He was 58 when diagnosed and passed just after his 67th birthday. I was the one who had initially identified his "mild cognitive impairment" as my father was a college lecturer and a very clever man, so it was rather apparent when his once-brilliant memory seemed to be failing him. He was diagnosed very early thanks to csf biomarkers and managed well for a number of years until his disease deteriorated in the last three years of his life.
As I have mentioned before, both my brother and I have MS (as does our older first cousin, my Dad's direct nephew) and unfortunately, my MS has greatly affected my cognition. I was given an assessment by a neuro psychologist in 2020, who confirmed definitive memory impairment but my executive functioning remained untouched. I suspected this to be the case as I am still able to function within a professional capacity, although I work from home. However, I have recently begun having issues with language, such as not being able to get words out, or not understanding their meaning (even though I know the meaning of the word if that makes sense!).
I had read the research paper you refer to and it has given me hope, as I admit that the fear of dementia in any form is one that both my brother and I are terrified of after watching our father suffer with it. We were genetically tested and thankfully, we don't have the APOE 4 gene but it's still a deep concern, particularly given my own cognitive issues.
If MS actually does reduce the likelihood of developing Alzheimer's then I can honestly say I will take MS. What my Daddy went through is not something I would wish on anyone.
I truly hope further research sheds light on the possible link between both of these conditions and contributes towards developing treatments to combat Alzheimer's disease in the future.
I understand why you’d take MS over AZD. My family story is similar. Myself and sister MS. She died with it. My father AZD. Later than your dad. Also he had dementia. It was truely horrendous. His sister and mum too. I have 2 sons with autism and all 3of my children are dyslexic and dyspraxic. We seem to be very neurologically challenged and I wonder if there’s a gene that plays a role. I know dyslexia is genetic. My dyslexia makes my MS word finding worse. As I’ve aged I regularly can not find words and I feel stupid. I’m fairly well educated and creative. But this is being stunted. That depresses me. Not depression first.
I am so sorry to hear of what you and your family have gone through. It really is such a difficult experience and one that not many people around you can necessarily relate to.
Strange really, when I read what I’ve written, I think, wow that’s a lot of poop to deal with. I think when you live with lots of diversity you just get on with things
I think the hardest thing is seeing my 34 year old trying to fit into the world. We went to a specialist school. I was told when he was 10 he probably wouldn’t be able to drive. Totally bizarre comment during an assessment at kings London. Well now he drives the biggest HGVs all over Europe. I’d love to search that doctor out. Tell him never say never, he very nearly destroyed my hope. There are many parallels with things I was told about MS decades ago. And why I ignored a lot of it. Glad I did. 🙂
My sons are ADHD/Autistic and have dyspraxia and dyslexic traits as part of that spectrum. What's interesting is thanks to MS primarily affecting my Cognitive function and language retrieval, I now have a good insight into my son's executive functioning challenges, which are quite similar in many ways!
Like Dyslexia, ADHD and Autism are also genetic and all are very closely linked - all three are very likely to occur within 1st-degree relatives from what i've read. I also have a sister (who was adopted) who also has MS, and her son is also autistic. A husband who is autistic and a mother in law who is Dyslexic. There are other nieces and nephews on the spectrum and Grandparents with AZD. I know that my MS cognitive problems were a result of a relapse, however i can't be certain that i may have always had different brain processing in the first place, such as ADHD, that i'm only now finding more of a challenge thanks to additional MS cognitive impairments...really it's not that important, it's just interesting to ponder.
So I just wanted to reassure you really and send a big hug. I'm sure you already know that neurodiversity is a lot more commonplace than science has previously asserted, society at large is very slow to catch up with reality and therefore prejudice, ableism and negativity prevail - often within the medical world itself thanks to the perpetuation of harmful assumptions and diagnostics of the hideous DSM etc. I'm so sorry you had that experience with Kings and really it's unforgivable. We recently had to complete a Connors assessment for ADHD and it was truly shocking and utterly insulting for children to be asked by medical experts disturbing questions such as if they steal handbags and set property on fire, tell lies on purpose and enjoy hurting animals - what the hell has this got to do with executive functions?! it shows the terrible ignorance and judgement from the so-called 'experts'. Hopefully we will see a 'Prof G' within the space of diversity, who can challenge and update the medical profession's ignorance and change things from the inside out.
Apart from neurodiversity being common, it seems that neurological diseases are also relatively commonplace and so i think it's just going to be fairly likely to find Neurodiversity and unrelated brain diseases within a family - just like it might be to find cases of cancer or immune disease.
Over the last few years many cognitive processing activities have declined and some are quite subtle. General background noise distracts me from what I am trying to do and my memory is dreadful. The worst of them all are the time it takes me to process and answer a a question and be imaginative such as thinking what to cook for supper. A lack of energy is also a significant problem but I'm sure that is a different issue problem. These problems are not life threatening but they have an impact on my quality of life. Overall, over that last few years I have lost mental agility but what the hell, I still enjoy life and keep myself busy
Excellent comment! The subtlety still is irritating! A multi stepped recipe I used to put together on autopilot. Gone! As you say, that’s one of my “oh wells”!
Thanks for this article. Trileptal and baclofen had a bad effect on my cognition which is really distressing me but no one seems to think it’s a big deal. So I greatly appreciate this article. It’s not just me making it up!
But which one is it - pwms don't get azd or people with azd don't get ms - and why do some people get neither?
Recall the time of the Aids crisis in the 80's reading that no one with m.s. had developed Aids - not sure if that was right.
From a wider perspective are there some conditions that pwms don't get?
Cognitively - at 78 think I'm doing ok. Biggest issue over the years re.cognitive function was my inability in exams or job interviews to think and formulate answers under pressure. Usually resulting in poor exam grades and not getting jobs!
I was given ill health retirement from teaching last year at age 52 and this was mainly because of cognitive impairment, which worsens severely with fatigue, and is my worst symptom (I can still climb mountains!). I was assessed by my OT who I'd been seeing since shortly after my diagnosis, and I believe it was her report that led Teachers Pension to award at the highest level. She used the Cognitive Assessment of Minnesota, and this showed that attention and auditory memory are affected. It also showed I have excellent executive function, and she suggested that I have used this to mitigate cognitive decline over the years, but this has got harder and harder. I suspect being perimenopausal is part of this. I actually remember a year or two before my diagnosis (I was about 40) feeling like there was something going on in my head but I didn't know what and feeling scared by it. I couldn't think properly. I now believe I may have been having a relapse at that time. I have come off all medication recently apart from supplements, including baclofen, partly because of your post on it. Unfortunately I've also had to come off Fingolimod as next month I will have a hysterectomy as I have been diagnosed with EIN which is a pre-cancerous condition. I am definitely feeling worse cognitively. I have always felt better cognitively and fatigue-wise on a DMT (was on Nataluzimab previously). Maybe that's some kind of placebo effect. And maybe the underlying anxiety is also affecting me. I do feel frustrated that cognitive issues are never talked about by my consultant at diagnosis, or my ms nurse. Luckily I have a great OT.
MS 34 yrs. I take Lions Mane so thinking is ok.. my brother age78 has Alzheimer’s in a nursing home. I Fear I could get this so doing the correct things like 1.Diet,exercise,meditation,Friends!!
Email: "Is 200 brains a large enough number to conclude that MS and Alzheimer's do not happen together?"
Yes, based on the age of the patients, I.e. the majority were over 50 with many in their 60s we would have expected ~20-30% of them to have early AZD pathology.
I tried doing the maths on this and initially thought 2:200 pwMS would also develop Alzheimer’s disease, but it’s far more complicated than that. Both conditions have increased prevalence with age. Both conditions shorten lifespan. Even where RRMS is reported not to shorten life expectancy, when RRMS gets bad enough to shorten life expectancy it gets retitled SPMS, messing all the numbers up. The two features of brain biopsy in Alzheimer’s are beta pleated amyloid sheets and neurofibrillary tangles. Alzheimer’s research is still undecided whether these are the cause of or consequence of Alzheimer’s, so even if absent, it doesn’t help one way or another because you don’t know if MS or it’s treatment has prevented the Alzheimer’s disease, or just the histopathological features. Logically, MS causes brain volume loss and a good cerebral reserve is protective in all kinds of dementia, so MS neuronal loss should accelerate Alzheimer’s if they were to coincide. Even if you were to know the answer, without subgroup analysis you wouldn’t know if if it was therapy or disease driving any difference. New Alzheimer’s drugs, preventing the formation of the biopsy features, results were clinically disappointing.
All the Queen Square brain bank cases were from the pre-DMT era. Therefore, this observation is likely to be out of date. I have been in the field for 30+ years and have yet to diagnose AZD in someone with pre-existing MS. I suspect this may simply because MS causes a dementia and hence it is labelled as MS dementia instead of AZD. On the other side of the coin I have seen multi-infarct dementia in pwMS. Clearly more work needs to be done to resolve this issue. All I was pointing out that is using new biomarkers for AZD pathology it looks like pwMS are reduced risk of getting AZD. I find this interesting.
Ask Grok: How does the cognitive impairment associated with multiple sclerosis differ from that associated with Alzheimer's disease?
Grok's Response
Multiple Sclerosis (MS) and Alzheimer's disease both affect cognitive functions, but they do so in distinct ways due to their different pathologies:
**Multiple Sclerosis (MS):**
- **Pathology**: MS is an autoimmune disease where the immune system attacks the myelin sheath, the protective covering of nerve fibers in the brain and spinal cord. This leads to lesions or scars (sclerosis) that disrupt the transmission of nerve impulses.
- **Cognitive Impairment**:
- **Type**: MS often leads to what is known as "mild cognitive impairment" in many patients. This impairment can affect information processing speed, attention, executive functions (like planning and problem-solving), and memory, particularly short-term memory.
- **Pattern**: The cognitive deficits in MS can be inconsistent, with good days and bad days. This variability is often due to the fluctuating nature of the disease, where new lesions can temporarily or permanently affect cognitive functions.
- **Progression**: Cognitive decline in MS might not follow a predictable pattern. Some individuals might experience significant cognitive issues early on, while others might never develop noticeable cognitive impairments.
- **Emotional Impact**: MS can also lead to emotional changes, which might be mistaken for cognitive issues, like mood swings or depression, which can further impact cognitive performance.
**Alzheimer's Disease:**
- **Pathology**: Alzheimer's is characterized by the accumulation of amyloid plaques and tau protein tangles in the brain, leading to the death of neurons and loss of brain tissue over time.
- **Cognitive Impairment**:
- **Type**: Alzheimer's primarily affects memory, especially episodic memory (memory of events and experiences). As the disease progresses, it impacts other cognitive functions like language, spatial abilities, and judgment.
- **Pattern**: The progression is generally more predictable, starting with forgetfulness of recent events and gradually affecting older memories and other cognitive domains. There's a steady decline in cognitive abilities over time.
- **Progression**: Alzheimer's follows a more linear path of deterioration, with stages from mild cognitive impairment to severe dementia where individuals lose most cognitive functions.
- **Emotional and Behavioral Changes**: Alzheimer's can also lead to personality changes, delusions, and agitation, which are often more pronounced in the later stages.
**Key Differences**:
- **Nature of Impairment**: MS often leads to a patchy, inconsistent cognitive impairment where certain cognitive functions might remain relatively intact, while others fluctuate. Alzheimer's, however, typically starts with memory loss and progresses to a broad cognitive decline.
- **Pathological Basis**: MS's cognitive issues stem from demyelination and lesions, which can be widespread but are not uniformly degenerative like the neuron loss in Alzheimer's.
- **Prognosis and Progression**: MS can have periods of remission where cognitive function might improve, whereas Alzheimer's disease is relentlessly progressive with no remission.
- **Diagnosis and Management**: While both conditions can be diagnosed through a combination of clinical evaluation, imaging, and cognitive testing, the approach to management differs significantly, focusing on symptom management and disease-modifying therapies for MS, and symptomatic relief, cognitive training, and eventually palliative care for Alzheimer's.
Understanding these differences is crucial for proper diagnosis, management, and support for individuals affected by these conditions.
I have had worsening for sure as I have told you before. The neuro’s just dismiss it as anxiety and not ms. They won’t talk about it. If it’s not on that dam MacDonald criteria or edss then they don’t accept it as ms - where as every article we read says these symptoms are common with ms
My cognitive abilities have taken a hit lately, with a decreased ability to remember things and a feeling of general slippage. I've also lost my creative spark. It's frustrating. Not sure if this is because I also live with MS induced depression or if I'm just old and tired.
me too dorothy on slippage!
It is hard to know, indeed. Re the creative spark: there just doesn’t seem to be enough time either with this flipping fatigue. I am trying to write down everything I possibly can!
Cognitive impairment is far and away my worst MS symptom. I worked in a high-paced, high-functioning career when I was diagnosed back in 2004, which was prior to the dawn of decent dmts. I'd also had MS for many years pre-diagnosis, so once the relapse ball really got rolling it was hard to contain the damage. I ended up off work permanently in 2005 due to cognitive impairment. I was only 33.
At the time, I went through a full battery of cognitive testing. If I remember correctly, it took many, many hours and was incredibly taxing (pasat test, anyone? lol).
Unfortunately, since then I have sort of fallen through the cracks when it comes to any sort of follow up for these issues. My career was written off, I was sent a report of the findings of my testing and that was sort of the end of the matter. Now I'm left to sink or swim in my own set of routines and coping strategies. I know our healthcare system is overwhelmed, so I'm ok with this, but it does feel a bit lonely and unsupported at times.
I'll be 52 in a week or so and it's comforting to know that I can likely cross AZD off the list as a potential concern.
Cognitive are my worst symptoms. I have drastically reduced the amount of fiction I read because I don’t retain plot developments or characters. I am much less effective in managing my tasks. Organizing lodging for a June wedding for my large family was a Herculean task, and 10 years ago it would have been no big deal.
The depression is a real bummer (ha ha). It’s a weird kind of depression: not a steady hum of melancholy (as I had when dealing with a boatload of life events as a young adult), but a greatly variable state. Feels a tad bipolar, only in the lability.
I asked my neuro if pwMS have more depression because the loss of function is distressing, and she said yes, AND that MS causes structural changes in the brain that cause depression. A double whammy! I appreciated her letting me know this. It’s the kind of info that could cause one to give up: depression is now hard-wired into my brain, there’s no beating it.
But although at least half my days feel Sisyphean (life is a slog!), I still believe (wrongly!?) that it could improve and is worth trying.
I will get a cog eval in Nov: my neuro wanted me to wait at least that long after the January Dx (PPMS) to let me settle with the diagnosis.
PS: Dr. G, your answer to this Q about MS and Alzheimer is reassuring to me. I HAVE fretted, should I look into AD too, as part of my coping-through-studying strategy? This post suggests I needn’t add it to the mix. Thank you!
Please see comment above about the QS observation being in the pre-DMT era and hence we need new data to confirm this. But I agree the overall picture is consistent with a lower risk of AZD in pwMS.
Ah yes, I see. Thank you
Other types of dementia are available. Alzheimer’s accounts for about 60-70% cerebrovascular 15%. What are your thoughts on comorbidity of cerebrovasular disease and MS. I imagine it mght be more than the normal population. My diagnosis of MS was made during COVID when MRI scan was not readily available. Thinking that a stroke was possible I had a CT scan that suggested small vessel disease. An MRI later pointed to inflammatory disease, and I did have a history of symptoms compatible over the years leading up to this. I still wonder about the differential diagnosis as I had no spinal lesions or oligoclonal bands.
Since this last episode cognitive problems have been more problematic with word finding, attention and problem-solving difficulties especially when fatigued. Maybe taking about 3 times as long to write this comment than I would have before, and I’ve shot over to WORD to spell and grammar check
MS consultant told me “well, you don’t have a normal brain and suggested trying to forget about it and get on with life. He has also suggested that as I’m a retired psychiatrist I could map out my own deficits. (really needs a psychologist or neuropsychologist with specific resources and training). When I asked him about brain atrophy, he quickly looked at my MRI and said he didn’t see anything particularly worrying.
Strange attitude from my Consultant. “Some people don’t need to worry so much about cognitive function (alluding to the fact that I am retired perhaps) and, sorry to any farmers out there, suggested that a farmer would not need not worry about cognitive function but a software developer would.
Wow. Consultant a tad disrespectful regarding anyone’s occupation..Quality of life!
Reasons I’ve had worsening cognition - or cognitive FATIGUE which is slightly different:
1. Sleep deprivation. Per all my sleep doctors, sleep fragmentation for any reason is neurologically devastating. Absolutely hammers at cognition.
2. Untreated thyroid. But my TSH was low for a long time despite T3 and T4 also being low. So not treated.
3. Low cortisol. The older pwMS may find cortisol low normal and it can be sleep disruptive just like high cortisol - and melatonin or magnesium before bed will make sleep worse. Less sleep - poorer cognition.
4. EBV reactivation - incredible cognitive fatigue. As well as motor and general fatigue. I can’t do simply math calculations (adding and subtracting or multiplying numbers 10) in my head when reactivated which is horrifying.
5. Spasticity and spasms before they were managed. Again, sleep disruptive. So many of our cognition reducing issues are due to sleep deprivation.
6. Mixed apnea. Every person with MS - even if they don’t snore! - needs a sleep study.
I have struggled severely with cognition but thankfully it’s all been due to manageable conditions, not directly due to MS.
I’m grateful to work with a naturopathic doctor who has helped me figure out the problems. My gps and even MS neuro are quick to label cognition “just MS”.
About two years before MS diagnosis I was sent for neuropsychological evaluation and testing at age 55. I was having trouble concentrating and word finding. Also I couldn’t figure out how to open my granddaughter’s stroller. I might as well have flown the space shuttle than to open that stroller LOL
The results of testing were mild cognitive impairment. Since then, over the years, being able to multitask and plan things along with short term memory have been an issue. Again went to a different neuropsychologist two years ago that’s at my MS neuro and I’m still in the mild cognitive impairment range.
I’ve had what I call low-grade depression most of my life, anxiety.
And bad panic attacks when I was younger. Most prominent now are mood swings. Now I’m 69 and I keep a daily journal and make “to do” lists. Which help me handle daily life better.
Thank you for raising this pertinent topic Prof G. Coincidentally, I was discussing this with my Neurologist only last week at our annual appointment.
To give context: my father sadly passed from Early Onset Alzheimer's disease in January of this year. He was 58 when diagnosed and passed just after his 67th birthday. I was the one who had initially identified his "mild cognitive impairment" as my father was a college lecturer and a very clever man, so it was rather apparent when his once-brilliant memory seemed to be failing him. He was diagnosed very early thanks to csf biomarkers and managed well for a number of years until his disease deteriorated in the last three years of his life.
As I have mentioned before, both my brother and I have MS (as does our older first cousin, my Dad's direct nephew) and unfortunately, my MS has greatly affected my cognition. I was given an assessment by a neuro psychologist in 2020, who confirmed definitive memory impairment but my executive functioning remained untouched. I suspected this to be the case as I am still able to function within a professional capacity, although I work from home. However, I have recently begun having issues with language, such as not being able to get words out, or not understanding their meaning (even though I know the meaning of the word if that makes sense!).
I had read the research paper you refer to and it has given me hope, as I admit that the fear of dementia in any form is one that both my brother and I are terrified of after watching our father suffer with it. We were genetically tested and thankfully, we don't have the APOE 4 gene but it's still a deep concern, particularly given my own cognitive issues.
If MS actually does reduce the likelihood of developing Alzheimer's then I can honestly say I will take MS. What my Daddy went through is not something I would wish on anyone.
I truly hope further research sheds light on the possible link between both of these conditions and contributes towards developing treatments to combat Alzheimer's disease in the future.
I understand why you’d take MS over AZD. My family story is similar. Myself and sister MS. She died with it. My father AZD. Later than your dad. Also he had dementia. It was truely horrendous. His sister and mum too. I have 2 sons with autism and all 3of my children are dyslexic and dyspraxic. We seem to be very neurologically challenged and I wonder if there’s a gene that plays a role. I know dyslexia is genetic. My dyslexia makes my MS word finding worse. As I’ve aged I regularly can not find words and I feel stupid. I’m fairly well educated and creative. But this is being stunted. That depresses me. Not depression first.
I am so sorry to hear of what you and your family have gone through. It really is such a difficult experience and one that not many people around you can necessarily relate to.
Thinking of you and sending a hug x
Strange really, when I read what I’ve written, I think, wow that’s a lot of poop to deal with. I think when you live with lots of diversity you just get on with things
I think the hardest thing is seeing my 34 year old trying to fit into the world. We went to a specialist school. I was told when he was 10 he probably wouldn’t be able to drive. Totally bizarre comment during an assessment at kings London. Well now he drives the biggest HGVs all over Europe. I’d love to search that doctor out. Tell him never say never, he very nearly destroyed my hope. There are many parallels with things I was told about MS decades ago. And why I ignored a lot of it. Glad I did. 🙂
My sons are ADHD/Autistic and have dyspraxia and dyslexic traits as part of that spectrum. What's interesting is thanks to MS primarily affecting my Cognitive function and language retrieval, I now have a good insight into my son's executive functioning challenges, which are quite similar in many ways!
Like Dyslexia, ADHD and Autism are also genetic and all are very closely linked - all three are very likely to occur within 1st-degree relatives from what i've read. I also have a sister (who was adopted) who also has MS, and her son is also autistic. A husband who is autistic and a mother in law who is Dyslexic. There are other nieces and nephews on the spectrum and Grandparents with AZD. I know that my MS cognitive problems were a result of a relapse, however i can't be certain that i may have always had different brain processing in the first place, such as ADHD, that i'm only now finding more of a challenge thanks to additional MS cognitive impairments...really it's not that important, it's just interesting to ponder.
So I just wanted to reassure you really and send a big hug. I'm sure you already know that neurodiversity is a lot more commonplace than science has previously asserted, society at large is very slow to catch up with reality and therefore prejudice, ableism and negativity prevail - often within the medical world itself thanks to the perpetuation of harmful assumptions and diagnostics of the hideous DSM etc. I'm so sorry you had that experience with Kings and really it's unforgivable. We recently had to complete a Connors assessment for ADHD and it was truly shocking and utterly insulting for children to be asked by medical experts disturbing questions such as if they steal handbags and set property on fire, tell lies on purpose and enjoy hurting animals - what the hell has this got to do with executive functions?! it shows the terrible ignorance and judgement from the so-called 'experts'. Hopefully we will see a 'Prof G' within the space of diversity, who can challenge and update the medical profession's ignorance and change things from the inside out.
Apart from neurodiversity being common, it seems that neurological diseases are also relatively commonplace and so i think it's just going to be fairly likely to find Neurodiversity and unrelated brain diseases within a family - just like it might be to find cases of cancer or immune disease.
Sending a big hug!
Hello,
Over the last few years many cognitive processing activities have declined and some are quite subtle. General background noise distracts me from what I am trying to do and my memory is dreadful. The worst of them all are the time it takes me to process and answer a a question and be imaginative such as thinking what to cook for supper. A lack of energy is also a significant problem but I'm sure that is a different issue problem. These problems are not life threatening but they have an impact on my quality of life. Overall, over that last few years I have lost mental agility but what the hell, I still enjoy life and keep myself busy
Excellent comment! The subtlety still is irritating! A multi stepped recipe I used to put together on autopilot. Gone! As you say, that’s one of my “oh wells”!
Thanks for this article. Trileptal and baclofen had a bad effect on my cognition which is really distressing me but no one seems to think it’s a big deal. So I greatly appreciate this article. It’s not just me making it up!
But which one is it - pwms don't get azd or people with azd don't get ms - and why do some people get neither?
Recall the time of the Aids crisis in the 80's reading that no one with m.s. had developed Aids - not sure if that was right.
From a wider perspective are there some conditions that pwms don't get?
Cognitively - at 78 think I'm doing ok. Biggest issue over the years re.cognitive function was my inability in exams or job interviews to think and formulate answers under pressure. Usually resulting in poor exam grades and not getting jobs!
Thanks.
I was given ill health retirement from teaching last year at age 52 and this was mainly because of cognitive impairment, which worsens severely with fatigue, and is my worst symptom (I can still climb mountains!). I was assessed by my OT who I'd been seeing since shortly after my diagnosis, and I believe it was her report that led Teachers Pension to award at the highest level. She used the Cognitive Assessment of Minnesota, and this showed that attention and auditory memory are affected. It also showed I have excellent executive function, and she suggested that I have used this to mitigate cognitive decline over the years, but this has got harder and harder. I suspect being perimenopausal is part of this. I actually remember a year or two before my diagnosis (I was about 40) feeling like there was something going on in my head but I didn't know what and feeling scared by it. I couldn't think properly. I now believe I may have been having a relapse at that time. I have come off all medication recently apart from supplements, including baclofen, partly because of your post on it. Unfortunately I've also had to come off Fingolimod as next month I will have a hysterectomy as I have been diagnosed with EIN which is a pre-cancerous condition. I am definitely feeling worse cognitively. I have always felt better cognitively and fatigue-wise on a DMT (was on Nataluzimab previously). Maybe that's some kind of placebo effect. And maybe the underlying anxiety is also affecting me. I do feel frustrated that cognitive issues are never talked about by my consultant at diagnosis, or my ms nurse. Luckily I have a great OT.
Does MS lower dementia risk?
https://neurosciencenews.com/multiple-sclerosis-dementia-27577/
Hi Christopher, thanks!
you're welcome.
MS 34 yrs. I take Lions Mane so thinking is ok.. my brother age78 has Alzheimer’s in a nursing home. I Fear I could get this so doing the correct things like 1.Diet,exercise,meditation,Friends!!