I suffered from low level chronic carbon monoxide poisoning in 2014. It has taken a very long time to be heard and many GP visits also hospital visits. My symptoms are almost the same as MS. An MRI scan showed white matter lesion’s that can be associated with carbon monoxide poisoning. I suspected MS a long time ago due to the chronic pain I suffer from. I have been diagnosed with brain injury secondary to carbon monoxide poisoning and multiple neurological symptoms. Is there anyone here who has suffered from carbon monoxide poisoning that has triggered MS ? I had no idea that carbon monoxide alarms don’t sound at low level.
So sorry to hear of your problems.
I have to confess that I’d never heard of CO poisoning triggering MS. A quick Google suggests that some of the neurological effects from carbon monoxide poisoning are actually the result of an autoimmune reaction
(Long-term Effects Of Carbon Monoxide Poisoning Are An Autoimmune Reaction -- ScienceDaily) and the damage can be delayed somewhat (though by weeks rather than years) such that it can appear like the issue is either ongoing or the result of a totally separate thing (https://www.sciencemag.org/news/2004/08/carbon-monoxides-two-pronged-attack).
It seems like actually you’re right on the money in terms of the symptoms being similar to MS - carbon monoxide poisoning can actually cause problems with the myelin that surrounds nerves, which is also what happens in MS, and CO poisoning can cause brain lesions that look similar to MS on an MRI (Oligodendrocyte dysfunction and regeneration failure: A novel hypothesis of delayed encephalopathy after carbon monoxide poisoning - ScienceDirect). Basically, from what I can tell from a very brief look at online sources (and I freely admit I’ve only looked at a couple of the first things, though Is am happy to keep trying to look further if you’d like), the symptoms of CO poisoning can be incredibly similar to MS, and the damage can take a bit of time to finish becoming apparent because it’s not just the immediate or even chronic carbon monoxide poisoning that causes neurological problems, it’s the damage from the way your autoimmune system reacts to that CO damage. In other words, it’s extremely, extremely unlikely that CO poisoning would trigger MS, but it absolutely does trigger your immune system to cause further damage which is pretty similar to MS in a lot of ways. In theory, you shouldn’t need the kinds of treatment that is offered to people with MS because it shouldn’t keep getting worse, and the actual mechanisms and the course of the diseases - MS vs CO poisoning - are different, so you shouldn’t have relapses as in some types of MS (where you have neurological symptoms which come on and last anything up to a month or so, and then completely resolve). It seems more likely that your symptoms are, at this point, going to be ongoing, but hopefully only remaining at the level they’re at now.
I would talk to your neurologist about it if you can, but I wouldn’t worry yourself too much that you might have MS; it seems like these are the sort of symptoms you might expect from what you experienced. That said, you might find that because the effects are similar, some of the resources for MS patients (in terms of coping with symptoms) are also useful to you, and of course, if things continue to change or get worse, you should return to your doctors and let them know that.
Hello and thank you so much for your help. I have had a glance at the links you sent to me. May I say thank you so much for taking the time to search for this. I have terrible problems reading and retaining info, it will take a while for me to read. I am not sure at the moment if the neurologist has decided for sure that I dont have MS. I know I have brain injury just waiting for more tests. She is sending me to have a specialist test due to my blurred and double vision in one eye. She tells me my plantar examine is not normal, my feet come up when she does her test. I find it difficult to describe things. Gosh even trying to find how to reply to you has taken me a while. I am truly grateful for your reply and any help that you find will be appreciated. Have a lovely day x
You are very welcome; I was run off my feet all day yesterday but have set an alarm to have a further look into the research on this tomorrow, and will see if there’s anything major I’ve missed. I’m still fairly sure that I won’t find any suggestion that carbon monoxide poisoning can trigger MS, but I’ll try scouring the research a little harder just to check.
It can be so difficult getting things done when you have some difficulty taking in and remembering information and formulating responses to written conversations like these! Are you being given any help on that front? Did your doctor put you in touch with anyone who could offer you specific support for brain injuries? There is a charity called Headway who specialise in brain injuries from all sorts of causes, and I know that they have a free phone number you can call if you ever just want to talk to someone (0808 800 2244, 9am to 5pm Monday to Friday). They also have lots of resources and information on their website that you may find helpful, although there is a lot there so if there’s anything specific you’d like me to look for, I don’t mind doing that for you if you’d find that helpful. I know Headway because I once got some information from them on stroke-related brain injury, but they have a whole section on carbon monoxide poisoning (Carbon monoxide: A danger to your brain | Headway) so it’s clearly something they cover.
And don’t worry, it can be really tough to describe what symptoms you’ve been having even at the best of times!
Neurologists tend to try to rule out as many possible causes as they can before formally considering making any kind of diagnosis of MS. To diagnose MS you have to meet certain criteria. One of these is having brain lesions, but in your case it may have been difficult for them to tell any potential MS lesion apart from those caused by your bout of carbon monoxide poisoning. When did you have your MRI done? If it was a while ago, your neurologist may well decide to do another one; if there have been any changes from the first one you had, that may be able to tell them a lot, or at least help to point them in the right direction. If they do suspect MS they may also try to do a lumbar puncture, where they use a needle (under local anaesthetic) to take some fluid from around your spine. This is the same fluid that your brain floats in, and they can have it analysed in a lab and these results can also be used to help them make a diagnosis.
It sounds like your neurologist is on the case and it’s good that you’re seeing a specialist about your vision. Sometimes an optician can help to correct double vision with a pair of glasses, by putting a prism lens into the lens for the eye which is having problems (or both eyes if they both are). If you wear glasses normally, they can make you up a new pair which are your regular prescription but also have the prism. Prism lenses look normal (although they’re sometimes a little thicker than other lenses), but if you look at them them edgeways you’ll see that the lens is thicker on one side than it is on the other. Not every cause of double vision can be fixed with prism lenses, but many can: they work by helping your pupils to line up images correctly by encouraging them to look in the exact same direction at the same time.
Overall, from what you say it sounds like you’re in good hands, and that the neurologist is taking you seriously. If it does turn out to be MS it can take a very long time to be diagnosed, but I’ve seen others on the forum (people who know a lot more than me) say that if it is indeed MS, it will make itself known at some point, with a development in symptoms and a development in the lesions they see on your MRI. If your neurologist does suggest another MRI, I would ask if they can also please also do your neck and spine. My understanding is that MS with spinal lesions is rare, but if the head and neck come back fine/no change and they didn’t do the spine, I suspect you’ll worry about them having potentially missed something.
One last topic I would suggest is about recall. As you say, you’re having difficulties with describing symptoms and engaging with conversations like this, which is totally understandable. I would really strongly suggest that you start writing down your symptoms. Try to remember symptoms from the past: when you had them, what they were, how long they lasted. Add significant medical events, like when you suffered carbon monoxide poisoning, when you had the MRI, when you were diagnosed. Don’t worry if there are gaps, or you feel like a lot is missing, as you have time to do this, and anything is better than nothing. If you tend to find things come to you suddenly and then you forget them, maybe keep a notebook or piece of paper and pen to hand for a while and jot things down whenever you think of them, and when you’re ready, type it all up in roughly chronological (date) order. If you don’t know the dates of some of the medical things and you know they will be on your medical record, make a note of what you need to know, and take that note with you next time you have an appointment with your GP. Explain to them that you’re trying to gather information for your neurologist, and ask if they can check the dates for you. Your neurologist will have access to your medical record so there’s no need to be too in-depth about tests and things, you’re really just trying to create a timeline. Dates, symptoms, durations, severity etc. Print out multiple copies, and keep one somewhere safe, and give one to your neurologist. If it’s incomplete, tell them that. (Also email yourself a copy just in case you lose the file!)
When it comes to actual appointments, if your recal isn’t great, ideally I would suggest that you bring someone along with you who can help out by remembering what the Dr said, and maybe even by taking notes if they’re okay with doing that. With COVID, it’s a bit harder to bring someone along to your appointment. Instead, try asking the doctor if they mind if you record audio of the appointment so that you can listen later if you forget what they said about something. If I you have a smart phone like an iPhone they usually have an audio recorder like this this as standard (on an iPhone it’s called something like Voice Memos). You can also get digital dictaphones for not very much money; they look like little mini portable tape players and they record audio, and then you can put it on your computer (or some record to an actual tape). Years ago, I’m pretty sure I got a cheap one from Argos, so that might be an alright place to start.
It’s possible someone else will add more to this thread, and there are certainly a lot of people on these forums who know an awful lot about MS and health in general.
Right, I’ll pop back later or tomorrow after I’ve had a bit more of a look around at the research, but for now, I hope that you have a good day and that you’re able to silence your mind a little - sometimes the stress of worrying about things can be like a whole extra illness!
Thank you so much for your help. I was given a link that mentions how symptoms of brain injury from carbon monoxide from beginning, most of those symptoms I mentioned to my GP from 2014 up to 2020. I was told I was depressed. But this link also shows how it can progress.
Carbon Monoxide Poisoning Symptoms — National Carbon Monoxide Awareness Association ( national carbon monoxide awareness association )
They mention MS in that link. I was at my GP surgery yesterday and gave her a printed copy of the national carbon monoxide awareness association. I asked her and the nurse did they know a carbon monoxide alarm does not sound at low level, they where really surprised. Not many people know this and that is how I was been poisoned for so long and did not know until one evening it reached such a high level and that was when I collapsed. Lucky I was on the phone to my brother as I would have died.
I paid privately for my first MRI in 2016. It said microvascular ischaemic change but no evidence of carbon monoxide in the basil ganglia.
But I knew that it had to be wrong, no one would look to give a second opinion. I went back to my GP in 2020 and said, I have to see a neurologist because I know my brain and symptoms are not right.
I was a hypnotherapist for many years and had a sharp memory. Never was ill and now I have all these symptoms and need to know why.
So finally I got to see a neurologist in 2020. When I gave her only a few of my symptoms she said this is brain injury from chronic carbon monoxide poisoning. She said my cognitive neurological symptoms are from that.
She scheduled another MRI scan shortly after that. Brain and spine. It showed multiple white matter lesions on my brain. The radiographer said that these can also be seen in people with carbon monoxide poisoning. But the spine was ok she said. I would be very afraid to have a lumber puncture, she mentioned it and I told her I am too scared of it.
I did seek help from headway last year and was very thankful to get a brain injury card from them. I lose balance and get confused. This card is helpful at least it can show that my loss of balance is not down to alcohol. Its a bit embarrassing when people assume that your drunk when you lose balance.
Short term memory is an issue for me, losing concentration talking to doctors is frustrating. Your idea of a Dictaphone is what I will do, a great idea thank you. Also the prism lenses sounds great, I never knew about this. I will talk with the optician and get that sorted out.
I have an appointment at the neurophysiology department at the end of June. I dont know what that will show, I wish I could think straight to find out about it. Maybe I will get a clear head and find it somewhere.
Thank you once again it is so wonderful to find someone so caring. I have been ignored by doctors for so long, its just so kind of you to help me. Speak to you soon.
Sorry for not replying earlier; yesterday I was really disgustingly ill. I shan’t traumatise you with the details, but let’s just say it has taken more than 24 hours for my stomach to recover from the trauma lol.
I’m glad Headway were able to give you that card I too know the stress of fearing looking like you’re always fall-down drunk!
Honestly, I think that given all the stress and everything you have been through, you are doing really really well. This must all be incredibly difficult for you, but it sounds like you’ve done everything you can possibly be expected to (and more!) to push to get the medical care you need and deserve, and to spread the word to those around you so that they can hopefully avoid having to go through the same thing.
The link you provided was interesting and gave me a jumping off point, so thank you It didn’t give much in the way of references though, and whilst I found another site that said something very similar in tone and scope, and whilst the article I found is otherwise very well-referenced, it doesn’t give a specific reference to a reputable source for the suggestion that CO poisoning can cause MS and the actual website itself is for an organisation - a not-for-profit advocacy and research/referral group for people with multiple chemical sensitivities - whose scientific merit I cannot vouch for. I’m not saying that it’s bunk, but I’m not exactly sure it’s mainstream science. I’m not saying it’s not science, but there are some things on the site that I’m not totally sure about. Again, the rest of this article is really well-referenced and seems legit, but I’m not seeing any real evidence for their claim that CO poisoning might be the real cause of MS. Here’s what it says:
“CO poisoning has long been known as the Great Imitator in medicine since its symptoms may mimic of those of many other disorders, including:
Alzheimer’s · Addison’s · Anemia · Asthma · Attention Deficit Disorder · Autism · Chronic Fatigue Syndrome · Depression · Dysautonomia · Fibromyalgia · Irritable Bowel Syndrome · Lupus (SLE) · Migraine · Multiple Chemical Sensitivity · Multiple Sclerosis · Neurally Mediated Hypotension · Panic Disorder · Parkinson’s · Psychoses · Reactive Airways Dysfunction Syndrome · Reflex Sympathetic Dystrophy · Stress
Research into many of these disorders suggest that they may be caused by CO poisoning, and thus also possibly helped by CO treatments.”
Some Italian researches presented a study in which they found that particulate matter (PM) - tiny particles of pollution in the air, common in cities - had a link to MS. Basically they found that people living in urban areas which had high levels of this kind of air pollution had a 16% higher risk of developing MS (https://multiplesclerosisnewstoday.com/news-posts/2020/05/27/fine-particle-air-pollution-urban-life-raises-ms-risk-study-italy-suggests/). Now, PM isn’t the same as carbon monoxide, but both have effects on the nervous system and lungs.
This was not the first study to investigate a link between air pollution and MS. A study out of Turkey also found that areas with high levels of air pollution were associated with an increased risk of MS, although the study wasn’t very large or well-controlled (https://www.nature.com/articles/s41582-020-0322-x).
It’s important to note though that whilst some other studies also found that there did seem to be a link, one of the largest studies of women’s health (a study on the health of nurses) didn’t find any evidence of a link (Dirty City Air Might Raise MS Risk). In short, more evidence is needed.
So how might it work? This study gives some ideas - Association between air pollution and Multiple Sclerosis: A systematic review - ScienceDirect
Unfortunately I don’t have journal access, so I can’t see the full study, but the abstract gives some good ideas. It’s quite involved, so I’ll just post their summary ‘highlights’ here:
•The role of air pollution in the development of MS is critical.
•Oxidative stress resulting from air pollutants’ exposures, increases proinflammatory cytokines.
•Neuroinflammation and neurovascular damage resulting from oxidative stress could accelerate MS progression.
•Air pollution is a risk factor in the MS development and relapse episodes through the lung interaction of the immune system.”
(The article looks really good; I’m working on getting access. If I manage I’ll put up a more detailed summary of anything they have specifically on CO)
Another study looked at MS relapse rates and a whole range of air pollutants, and whilst some seemed to be linked to relapse, “MS relapse rates were not correlated with CO levels” (Effect of Air Pollutant Markers on Multiple Sclerosis Relapses)
In a similar vein, smoking tobacco is known to be a major risk factor for developing MS, and smoking also exposes you to a great deal of carbon monoxide. In fact, if you quit smoking and you’re being monitored by a GP or pharmacist, they use a CO monitor to check how you’re progressing (you breathe into it and it tells you how much carbon monoxide is in your body). This is where I found the main bit of hard scientific journal data about a link between CO and MS, and although it’s mostly saying stuff we already knew - that CO causes symptoms that look like MS and cause demyelination - I could see something like this being the source of where talk of CO poisoning causing MS could be coming from. (I’ve gotta warn you - it’s really, really science-y; it’s pretty hard reading):
“Currently, evidence suggests that smoking, due to nitric oxide (NO) and carbon monoxide (CO) production, plays an important role in MS. NO is a toxic soluble gas that in pathological concentrations can damage neurons and oligodendrocytes (31, 32). Lipid peroxidation and mitochondrial damage that result from NO can lead to oligodendrocytes apoptosis, axonal degeneration, and demyelination (33).
A previous study has shown that CO exposure leads to blockage of tissue oxygenation (34), myelin basic protein (MBP) degradation, and axonal injury as well as a subsequent inflammatory response including activated microglia and CD4+ lymphocyte invasion of the CNS, which results in demyelination (35).” - Multiple Sclerosis: Pathogenesis, Symptoms, Diagnoses and Cell-Based Therapy
This article - https://www.cureus.com/articles/35439-role-of-smoking-in-the-pathogenesis-of-multiple-sclerosis-a-review-article - is also a good source of information on the specific ways that smoking might be causing an increase in MS risk. Some of the things they note that might be relevant:
“Exposure to harmful gases like carbon monoxide (CO) affects tissue oxygenation and can lead to demyelination . Carbon monoxide (CO) neurotoxicity occurs through a number of mechanisms including lipid peroxidation, inflammatory, myelin degeneration, immune-mediated reactions, and finally neuronal apoptosis and necrosis. Smoking decreases the numbers of peripheral B cells and natural killer (NK) cells, decreases the production of cytokines by antigen-presenting cells, and reduces the blood levels of serum immunoglobulins . Nitric oxide (NO) and carbon monoxide (CO), in cigarette smoke, enhance the inflammatory response and attenuate some of the immune defenses resulting in increased susceptibility to infections [7,13]. These changes in the immune system explain a few possible mechanisms for increased susceptibility to viral respiratory tract infections in MS patients [7,11,13]. Respiratory infections are an essential trigger for relapse in MS .”
Notably, there has been some suggestion that an infection might be an important trigger in the development of MS, so if carbon monoxide - and presumably therefor also chronic carbon monoxide poisoning - are increasing your susceptibility to viral infections, then that could be a potential link in a roundabout way.
Basically, it looks like yes, there could theoretically be a link, but a lot more research is needed and it definitely doesn’t seem to be as straightforward as carbon monoxide poisoning causing MS. Even if it’s possible, you’d likely still need other risk factors, although I realise that doesn’t exactly rule it out as a possible link for you. Also, as I said the other day, it’s particularly complicated because over and over again you see places stating that the symptoms of CO poisoning can mimic those of MS, and you see case reports of people being investigated for MS or even given a preliminary diagnosis of MS before carbon monoxide was identified as the actual cause of their problems. Honestly, reading about it, it sounds like the fact that you were diagnosed as having it - even after quite a long struggle - is a real rarity. One article I read quoted another and said that “Chronic carbon monoxide exposure is misdiagnosed. A survey carried out by the charity Carbon Monoxide Support showed that in only one case out of 77 was exposure correctly identified on the basis of symptoms alone.(12)” (Europe PMC)
Moreover, when these places talk about CO poisoning mimicking MS, that’s kind of understating it. As I mentioned before, both carbon monoxide poisoning and MS cause damage to the myelin that surrounds nerves in the brain. This myelin sheath is essential for allowing electrical impulses (signals) to be sent and to flow quickly and smoothly. There’s a page on the Merk manual which says a little bit about this, and it says that both MS and CO poisoning are classified as demylinating disorders (Overview of Demyelinating Disorders - Brain, Spinal Cord, and Nerve Disorders - MSD Manual Consumer Version
As such, you’d expect that a lot (though not all) of the symptoms of CO poisoning and MS are going to be not just similar but more or less identical, and where places are talking about CO maybe playing a role in worsening MS, they’re often mentioning this. I guess part of the thinking is that if you already have MS, the additional damage caused by carbon monoxide is going to be in a way worse, because it’s causing damage you’re already struggling with, and the same the other way ‘round.
(There’s another article that might have some relevant info, and which I again can’t get access to because I’m not connected to a university. If anyone happens to be reading this that is, feel free to let us know what it says! Lol - https://academic.oup.com/ajcn/article-abstract/26/8/890/4732823?redirectedFrom=fulltext)
(Also, and this is kind of a side note, but strangely - and you may well have also run across this - there are a number of studies suggesting that low doses of carbon monoxide can be used as a therapy for patients with MS, as it seems to help reduce inflammation. Here’s a short article talking about one such study from 2007 - Good poison? Carbon monoxide may stifle multiple sclerosis. - Free Online Library - and there seems to have been some more work done since. This doesn’t exactly relate to your situation, but it’s very interesting).
Obviously there’s lots of information and links here, but I would suggest you not worry yourself with them too much. If you’re enjoying reading about it then by all means, but don’t feel that you have to. For now, focus on looking after yourself (everything I’ve read whilst researching this has suggested that reducing stress, getting plenty of rest, fresh air, laughter, good food and so on are very important for maintaining and healing the brain) and on getting ready for your appointment with neurophysiology.
I really hope that it goes well for you and that you’re able to get some answers, or at least some reassurance and care, and that you get a good doctor who is able to work with you and help you to feel really supported, believed and encouraged
Hello again and thank you.
You have provided so much information, I must apologise I read a couple of lines and forget what I have read. It is the same when I try to read a book. It will take me a long time to retain what you have posted.
I will read it over and over again.
Thank you again for your help, I truly appreciate it.