Just prior to my own diagnosis, (almost four years ago today), I was studying for a 2nd degree at university, when things suddenly somehow became harder to do... Finally, after struggling for about a term, I decided that perhaps I was needing a break, as I had recently completed one BA, and maybe that was enough for a while...? However, it wasn't like me... because I have always truly loved to study, almost anything... Just love learning really... Anyways, I was also going through some family issues due to my father's passing, so I opted out of study for a while...
Shortly thereafter I was diagnosed, and things since then have progressively become worse for me personally, from a mental fugue perspective, in any event.
My first experience of taking any sort of cancer drug was 'Hydroxyurea (HU)', and I can vividly recall the day I was driving, and suddenly had to stop and ask myself, "...where am I going and why?" My face welled up into inexplicable tears, as I truly had no idea what I was doing in my car... Extremely disturbing, was how I was felt!
What is interesting to me today, is that that process seems to have commenced even before I had started taking my cocktail of cancer therapy drugs etc...
One of those drugs I have taken at times, (Methotrexate - MTX), relates to this Post, and to the article below.
So if like me, any of you out there have ever suffered from 'Brain Fog' and didn't really understand why... perhaps reading this might help a little...
However, then there's the ultimate question: "Which came first, the chicken or the egg?"
This research suggests that MTX, (& possibly other cancer drugs), cause this damage due to a loss of myelin:
The myelin sheath is a protective covering that surrounds fibres called axons, the long thin projections that extend from the main body of a nerve cell or neuron. ... The main function of myelin is to protect and insulate these axons and enhance their transmission of electrical impulses.
What happens when myelin is damaged?
When the myelin sheath is damaged, nerves do not conduct electrical impulses normally. ... However, if the sheath is severely damaged, the underlying nerve fiber can die. Nerve fibers in the central nervous system (brain and spinal cord) cannot fully regenerate themselves. Thus, these nerve cells are permanently damaged.
What foods increase myelin?
Omega-3 Fatty Acids – Healthy fats play an important role in longevity and can be found in foods like salmon, chia seeds, flax seeds, soybeans, and walnuts. Healthy fats reduce demyelination because they replicate the fatty texture of myelin.
O am very interested in this, thank you for posting! I've been having mental fog kind of experiences for some years. Diagnosed this February, but haemotologist has noted my platelets started going up 10 years ago.
It has been put down to pre menopause, anxiety among other possible reasons. Started on hydroxy 9 weeks ago. Very interesting that it could relate to my ET....
It's quite distressing at times to find myself go completely blank suddenly as to what I'm doing and why. I also sometimes just unable to find a common word when I'm speaking, like 'tomato ' or something.
I very much appreciate your love of learning, we benefit from it on here, with your research! I have been thinking of doing an MA, but the brain fog is an issue. Thank you!
Thanks, Steve, as always so educational. When I was diagnosed with Fibromyalgia in my early 30’s, one of the side effects was brain fog or what they called “fibro-fog”. I was a special education teacher back then and it really affected my ability to teach. I finally left teaching when I was about 40 and eventually got my insurance license where I could make my own hours and the information was more repetitive and easier to impart to people. Of course, when I got diagnosed with ET at age 52, it didn’t help, but even became much worse a couple years ago when I became anemic. I just figure that this is my lot in life and I’ve dealt with it the best I can.
Sorry for my rant but this is a topic I’ve been dealing with more than half my life.
You are most welcome. It's worth noting that MPNs, are the conditions that cause the mental fog to take place.
I believe that we need to inform those who might diagnose these MPN conditions of this symptom, our GPs, and others. That way, people might better comprehend what is transpiring in their lives, and not think or consider themselves somehow a tad abnormal, if you take my meaning etc?
Hi Steve, I was diagnosed with ET Jak2 in October ‘19 and started on hydroxycarbamide. In the last couple months I’ve had 2 occasions where I can’t account for 20 minutes of my time. This info helps understand possibly why. Thanks for the post.
Hi Steve -- thanks so much for your post, the link and the explanation. Brain fog is my constant companion, and after reading this, I have a much better understanding of why and I'm very glad for that. I'm in my late sixties, so when all this started, I worried it was Alzheimers, but had a good doctor explain the differences between that and what I experience. Thank goodness.
Since the brain fog started, I've adapted as best I can -- working with new ideas in the morning, routine tasks in the afternoon, just easy conversations in the evening, knowing tasks I used to whiz through will take longer but can get done.
We've been doing jig saw puzzles these last weeks as we've sheltered in place, but with much harder puzzles than I'm used to because that's what the store had, and that's definitely a morning activity for me. In the last year, I've started taking on-line courses and have been happy to find I am still able to learn new things, as long as I take my time. All very satisfying, since like you, I also love learning. And, it helps to be stubborn
Thanks again; it's great to have the science for what's happening to us.
Sounds like you have mapped out a very wise approach to dealing with life's events...
Just reminding ourselves gently, upon occasion, is a way of recognising and reinforcing to ourselves that we have some good days, and some that could be better too...
Keeping the grey matter active is just as important as having a consistent physical exercise routine too...
Steve, I am so grateful that you posted this message. Though I have experienced similar issues over the past few years, I had never made the connection to my disorder (PV diagnosed earlier this year). I am for certain that the disorder has negatively impacted me. I know that you reference this issue being tied to the medication, hydroxy-urea, I am hopeful that the recommendations referenced in the article helps regardless. Thanks!
Thank you I take chia seeds o a regular basis but I have noticed and increase in my hu has also meant an increase in me losing words. Sometimes I look at a simple bill and I can’t add it up
Yes, it's not an odd occurrence at all, as I believe it is those simplest of things... that we stumble over first, and has us wondering about the ramifications...
Best wishes
Steve
Hi Steve, I too had severe mental fog before GP did any blood tests. So bad that I felt I couldn’t drive, couldn’t think straight , daily headaches and kept falling asleep in the day, aged 49! ( I have ET jak2+)
Luckily my gp also did Vit B12 test and mine was very low ( despite eating meat/ dairy etc)
Without adequate VitB12, your body cannot make myelin. This affects your brain and peripheral nerves. Lack of B12 can cause brain shrinkage and can mimic Alzheimer like symptoms, as well as a host of other neuro conditions like MS and Parkinsons.
There are many reasons that someone may be low in B12. It is already well documented that PPI’s , some diabetic drugs prevent you from absorbing B12. Perhaps the drugs you mentioned affect B12 absorption too?
I would highly recommend that people keep a check in their B12 levels. Also bear in mind that the serum B12 test is not without it’s problems and just because you are in range does not mean you don’t have a deficiency. MMA test and/or homocysteine test can help with diagnosis but again these are not foolproof.
Doctors spend about 1/2 day learning about vitamins, so don’t expect them to know much. that also applies to many( not all) haematologist who should know better. The guidelines are based on a study done in the late 1940’s on a handful of people, just seven if I remember correctly , all who had pernicious anaemia, a condition where they are unable to absorb B12 due to a lack of intrinsic factor. The serum B12 test measures both active and inactive B12, of which the inactive analogies can be as much as 90% of the total serum amount.
Always get a copy of all you blood tests results and do your own research. You are legally entitled to them.
For me, B12 has been an enormous help and has given me my life back.
Evening, and thank you for such an interesting and informative response.
I do take Multi 'B' supplements, along w/ D and a Multi vitamin...
However, I was not aware of the effect B12 has on myelin production.
I have always received all of my test results ever since this began... According to my last B test, (sometime ago now), levels stated were in the good range, as I recall...
My D is almost always deficient, and I have seriously commenced keeping up those levels, as I am very aware of that shortcoming. Strange though too, as I am outside quite often cycling, and have been for a good three years now...
... Methinks it is a combination of my MPN and my toxic levels via my drug regime... (?)
Re: vit D. Do you always use sun screen? If yes, your skin can’t make vit D.
Re: B12. What is a good range?? In uk and NL where I live, the lower range is around 150/160. If you lived in Japan the lower rate is 500. Same test, so why the difference?!
Mine was 51 points above the lower range ( and it can be a massive range in some countries) so both gp and haematologist said I was fine. What they clearly don’t know is that symptoms, especially neuro symptoms- and brain fog is included in this, can precede Hematological signs by years, sometimes many years, and this fact is corroborated in many medical papers.
Sadly too much trust is put in the official guidelines. There really hasn’t been the same quantity/ quality of research done in vitamins, other than finding out the minimum to prevent death. That is not the same as optimal health. Also, with drug testing they don’t check to see the effects they may have on vitamin levels.
Interestingly, scurvy is making a comeback too. Not sure the medics would recognize it though as they think this condition is a thing of the past and couldn’t possibly happen in this day and age.
Good that you have your test result. That way you can keep a check on things yourself.
Bear in mind that anyone taking a supplement ( esp B12) will seriously skew any further blood tests. It can make it look like they have enough even though the cells can’t actually use the analogues present.
Also B12 needs sufficient folate and iron to work properly. Good to check these too.
If you want to know more, I can highly recommend the book” Could it be B12 ?” by Sally Pacholok
Hi Steve, thank you so much for posting this amazing read, information that is so educational. I am with ET Jak2+diagnosed 2011 and was on Hu for over two and half years. I literally was 'gaga', that I was not even able to talk, think, remember anything, etc.. However, I experience some of those symptoms even before I was diagnosed and did not know what was going on with me. Even nowadays and since I am not on Hu any longer, six years (now on Peg Inteferon) I still get 'foggy brains, confusion, memory loss, anxiety, irritability, etc..
I am hopeful that one day soon there will be some miracle treatment for us all!
socrates_8 I can relate to all of the responses here and your post is really helpful. I was diagnosed almost a year ago with Budd Chiari - a liver condition - which was then linked to MPN and ET JAK-2. Following stent in my liver to deal with a blood clot stopping flow around my body, I was literally unable to think. Didn't know words, forgot what I was talking about mid sentence, couldn't concentrate when I drove.....Then I realised that some of this fog had existed prior to being diagnosed: I found it hard to concentrate and retain information. I was on HU and now on Interferon and still find it a bit of a struggle, indeed I even wonder if I'll get back to what I saw as 'normal' ever again! I left my job in March as felt a full-time job just wasn't sustainable but now I'm not sure what to do. I think it's completely knocked my confidence!! Your post and all the responses has been a bit of a reflective moment, as I realise I am not alone in going through this. I am 48, so many years of work ahead of me, I just need to work out what I want to do.
Ooh you live in Syndey socrates_8 . Love it there. Climbed the bridge which was amazing. I went in July and weather was great , so I am walking around in sleeveless dress by the Opera House and the locals have duffle coats and beanie hats on. Too funny. Take Care Looby
Really interesting thank you. So reassuring to know something of the diversity of research going on. Thankfully whilst I do forget things from time to time, this has never been too severe in recent years(as far as I know!), but prior to diagnosis and treatment I did have one or two more memorable memory lapses.
Thanks for passing on the info. You are always on it.
Have you found that fish oils etc have helped your mental fog? Is there any issues taking fish oils and blood thinners as I know there are some interactions between some of these. I have been thinking of including fish oil supplements in my cocktail (after consultation with an expert of course).
I suffer from mental slowness at times too which I think it occurs as a result of medication but also as a result of blood flow problems to my brain when not on medication. Although this is hard to tease out as I am usually medicated with something. Drives me nuts as I work in science so my brain is my most important tool.
I am a Pescetarian, so I am having fish & other forms of seafood very often...
Not aware of any issues, other than those that state it is extremely good for me etc...
Yes, your most important tool is one I also hold in high esteem, and was also very disturbed by when I came to realise that having an MPN, (including med's), mans that my mind and my memory are at risk...
Yes, still cycling, and have just upgraded to a new, faster, and lighter steed...
Working on a new Plan-B for the Fundraiser as we speak...
Thank you for initiating this important thread. There is growing evidence of links between mental health and mental problems and inflammation, which are likely to be of relevance and interest to MPNers. The following article might be worth a look if you have not seen it already:
This is an interesting paper, w/ many fascinating speculations and theories concerning 'Inflammation' as a causal factor concerning many diseases and conditions that we humans might suffer from etc...
Although the single author is Reviewing his own findings, one likes to always believe that any article that is present in any journal of medicine, has already undergone the 'peer-review' process... Usually, at the conclusion of such articles, the authors also acknowledge any contributing authors and or funding from various bodies, (most often other pharmaceutical companies ...) In so doing, being open and transparent, about any potential 'Conflicts of Interest'. This paper does not provide such a declaration, which leads me to ask why?
In any event, and all of that aside for the moment, I personally have long been a believer that 'Inflammation' which is he body's response to an injury or an infection, can and often does play a most active role in many forms of illness...
I have Post ET / Myelofibrosis (MF), and I take Ruxolitininb (Jakafi), which has certain properties that aid in reducing inflammation... so I am told...
Hence, many of the suggestions raised and implied by this article may indeed have some real weight in this hypothesis, in my view...
I for one try to maintain an anti-inflammatory dietary regime, coupled w/ consistent exercise, and intermittent fasting... I also take some supplements, and I am a Pescetearian, which simply means I love my seafood...
Thanks for Posting your link on this thread... Most interesting...
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