To all my MPN cousins, wherever you might be located…
Recently, I underwent my second BMB, in preparation for the consideration of undergoing an Allogenic Stem Cell Transplant (ASCT), as in February 2018 I learned that I also have the ASXL1 mutation as well as my CALR Type2. Upon learning I was ASXL1 positive, naturally, I grew concerned that my condition had commenced to progress… and I needed to become better prepared for what we know is the only curative option for MF sufferers…
However, (and please excuse the long-winded story to follow), when first diagnosed in May 2016, my BMB showed that I had scarring to the bone marrow of a Grade2 level… there is only 1 grade above that level (3), so it was considered as a serious state of play I guess…
That news turned out to be overwhelming for me, as my MPN discovery was completely by accident/surprise. For finally after much angst, I had been accepted for an overseas posting to S.E. Asia working in International Aid/Development, (a late career change), after more than five years of study… overcoming all the obstacles to become accepted for that position, I was just so thrilled and happy to have been accepted & be going.
However, two days before I was due to leave, the results of my mandatory medical examination became known, and everything changed…
My symptom burden at that time, was really just emerging (and I believe because the onset was a somewhat gradual affair – in my case - I tended not to really notice it, all at once).
A year earlier, I suffered from a TIA (minor brain stroke), (possibly due to high platelets), and after so many years of study… my midriff had also blown out a tad, and I now weighed in at almost 125kg, & my exercise regime was something I read about, and saw others undertaking ... ☹
Upon reflection, I recall that I was suddenly really struggling to complete my assignments on time, and felt under great pressure to perform, and that was very unusual for me, as I thrive on learning anything new. Once accepted for my o/s posting, I remember deciding to let my studies lapse, as I had completed 1.5 degrees at that stage…
In any event, I was so looking forward to my posting, and was already in 11th hour communications with my hosts on a remote Philippine island (Negros Occidental / Oriental), an island divided by its historical ideology.
At that juncture, I was fighting heavy fatigue and nausea, and telling myself that recent events in my own family were the cause with the passing of my father, and my studies playing their part etc…
However, I know now it was my MPN raising its ugly head to new previously un-alerted echelons.
After many months of fighting off the onset of depression, experimenting with a host of different drugs, and struggling poorly with doctors who knew so little…
...I made the conscious effort to know my enemy (MPN), and I actively commenced studying all things MPN. My university still provides me with online access to almost all medical journals, and since most of the medical profession knew so little about my condition, I became most determined to educate myself…
By the time I was to become aware of the potential adversity associated with having the ASXL1 mutation, I had already commenced making myself as healthy as I could via exercise and diet. It seemed a reasonable assumption to me that if one was to survive an ASCT, one needs to be as strong, and spritely as possible … for someone of my vintage (59).
In December 2016, Ruxolitinib dosing commenced at 20mg bd, and since that time, it has gone both up and down on a number of occasions to try to deal with my rather stubborn high platelet counts of circa 750-1M, (apparently higher platelets are more common with the Type2 CALR mutations).
At roughly the same time, I also started trying to improve my health via exercise and diet. Seriously tried the “ketogenic low carb” diet, and achieved some instant success, however, I was at first aware that this action would increase my fatigue levels dramatically, and mental fuge.
It makes complete sense if one contemplates the equation, less energy intake equals less energy. Simple really…
Admittedly, in the very beginning (my exercise regime start), also December 2016, I was really struggling to complete short walks. My fatigue and nausea were so extreme but I continued as best I could – poorly at first.
However, I did eventually become ever so slightly better, and bought an old mountain bike and began struggling to ride 3-5km 2x3 pw. It was so hard, the bike and I was so heavy but I kept at it…
As we all know, MPNs are a condition that affect the blood right? So how could I improve my blood composition? Better minerals/vitamins, and less junk foods… No more wine with my evening meals. However, someone with anemia is low in oxygen in the circulatory system. That’s what started me thinking about what might be the driving force behind my condition… And I began to learn a little about “Metabolic pathways”. Since becoming one of the people with an MPN, no doubt we have also started hearing about where in our systems that these adverse mutations are being acquired
– JAK Stat Pathways ring any bells for anyone?
The JAK/STAT signalling pathway is a promising therapeutic target for the treatment of obesity, metabolic syndrome, and diabetes (Dodington et al, 2018)
Obesity, a worldwide epidemic, is a major risk factor for the development of metabolic syndrome (MetS) including diabetes and associated health complications. Recent studies indicate that chronic low-grade inflammation (CLGI) plays a key role in metabolic deterioration in the obese population (Mishra et al 2015).
Although cancer has historically been viewed as a disorder of proliferation, recent evidence has suggested that it should also be considered a metabolic disease. Growing tumors rewire their metabolic programs to meet and even exceed the bio-energetic and biosynthetic demands of continuous cell growth (Coller 2014)
Cells that cannot generate enough energy due to lack of oxygen, sugars or proteins, common to many cancers, use altered metabolic pathways to ensure their survival. Unfortunately these cancer cells' success comes at the expense of the host patient (Medical Net–news, 2018)
Hence, anything that helps that condition should prove most beneficial – exercise had to become my new mantra! Learning how to breathe again in concert with consistent exercise (and diet), may have saved me, or at the very least increased my longevity…
In any event, back to my good news… as of my last BMB, my bone marrow scarring is now considered to be only Grade 1, as opposed to 2 that it was previously…
… and just to reiterate, I am not suggesting that I have been cured of course, as I haven’t.
However, my fibrotic condition has witnessed a significant improvement, and it appears logical to me, (even if not to anyone else), that much of this has eventuated via my concerted efforts of both diet and exercise over these past 18mths or so since my original diagnosis…
Naturally, my Hematologist is upset with me because I believe my ‘exercise & dietary regime’ has more to do with my improvement than all the medications put together. Ruxolitinib, is an immune suppressant, and most likely is also a contributing factor to my anemia. Therefore, hard to understand how it is really helping me at all… (although it has definitely alleviated some of my more chronic symptoms). Interestingly as well, anemia itself is a lack of oxygen in the blood…
Anemia is a condition that develops when your blood lacks enough healthy red blood cells or haemoglobin. Haemoglobin is a main part of red blood cells and binds oxygen. If you have too few or abnormal red blood cells (which can be initiated by immunosuppressive treatment), or your haemoglobin is abnormal or low, the cells in your body will not get enough oxygen (causing breathlessness to one extreme or the other). (Wikipaedia)
However, I am no Einstein (not by any stretch of my self-proclaimed delusions of grandeur) therefore, I still have much to learn…
So as a quick update to my possible ASCT; my brother has recently acquiesced, and been tissue typed (TT) to see if he is a match, because the MUDs found thus far are somewhat less in that capacity. My younger sister returns to Oz in September, and then I shall also broach the subject with her, if required.
However, I am now seeing all of these actions as merely preparing the way for when, and if, an ASCT is required, rather than believing that an ASCT is a forgone conclusion at some stage... As well, a donors age can sometimes render one’s stem cells as inadequate…
Therefore, perhaps an ASCT is not the only curative option after all… (?)
Incidentally, while I still suffer extreme fatigue, too many cold sweats and low grade temperatures, and a few other MPN symptoms, last week I cycled almost 180kms in three rides, and I am circa 20kgs lighter these days too…
This journey has only just begun… ☺
Best wishes to one and all…
Steve
Reference
Coller, H. A. 2014. Is Cancer a Metabolic Disease? The American Journal of Pathology, Vol.18,(No.1), pp. 4–17. doi.org/10.1016/j.ajpath.20...
Dodington, David. W, Harsh R. Desai & Woo, Mina. 2018. JAK/STAT – Emerging Players in Metabolism. Review|Vol. 29, No1, (Jan. 0, 2018): p. 55-65. (Accessed online Aug. 10, 2018<doi.org/10.1016/j.tem.2017....
Medical-net. 2018. Study suggests cancer to be a metabolic disorder rather than genetic disease. (Accessed online August 7, 2018). news-medical.net/news/20180...
Mishra, J., Verma, RK., Alpini, G., Meng, F., &
Kumar, N. 2015. Role of Janus Kinase 3 in Predisposition to Obesity-associated Metabolic Syndrome. J Biol Chem. Vol. 290,(No. 49):pp. 29301-12. )Accessed online Oct. 2015) Doi: 10.1074/jbc.M115.670331.Epub 2015 Oct 8.
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Hi Steve. Very interesting post. Thank you. So pleased that you have an improvement in your bone marrow, you do investigate and research a great deal to the benefit of us all. Amazing how your cycling strength has so improved also.
This is an example to us. I do not have MF . I have ET, but understand re fatigue and low heamaglobin, as I have. my iron is low, which is debilitating to say the least , just cannot do hills due to breathlessness.
You have had some highs and lows, but you are always there to offer help and advice to others. Your posts are so well written and aticulate. So forgive my lack of such good communication skills.
Keep doing what you are doing , and let’s hope that overseas job you wanted and worked so hard for is now going to be possible.
Thanks for your comments & compliments. By the way, I possibly spend more time re-editing my posts than most... In any event, the main thing for me is that there may be better solutions rather than just the usual suspects of GPs, Specialists, & filling those expensive prescriptions... We shall see I guess...
Lovely 2 hear ur news steve& things keep on improving 4u. U r indeed a very knowledgable man! & whether or not ur haematologist believes ur diet& fitness regime were anything 2 do wiv it,it certainly didn't harn it in anyway?. Well done! Atb,tina.
Hi Steve. Thanks for taking so much time & effort to educate us. A mini medical treatise which was very interesting. Can you please share what dietary changes you made? I’m sorry if your posting is permanently scrapped but with an MPN it’s probably best to stay where good health care can be accessed easily/quickly. Keep feeling well. BTW, I enjoyed your greeting. Katie
Lovely to be hearing from you & I hope all is well in your journey...
Thank you for you response.
Yes, my position is so-called 'Permanently scrapped... for now'
However, I will not yield completely... not just yet... although I may have to. There is so much to learn and understand concerning each of our very individually unique MPN conditions... btw, I do not refer to it ever as a disease... Metabolism going haywire, like all things, must have a cause & effect...
My thoughts are of course merely my own theories... Or Theories of the Moment (ToMs) for short. Of course, this might all change somewheres down the road, however, I remember how this struggle goes only too well... My exercise regime does not ever really become easier, (and it never has since I first commenced right up until now), I am simply becoming stronger, and therefore more able to undertake those efforts, at present...
I am still breathless often, (especially if I don't exercise for some reason), and anaemic always, however exercise helps to replenish & oxygenate our circulatory system, and that's why it helps, in my view...
How hard those days were when I could not even motivate myself to take a short constitutional stroll... Astounding really!
My diet started out as a Low Carb - High Fat regime of just whole foods (ketogenic), I am also a pescetarian, so no meat & chicken ever. All of those poor creatures are fed & artificially fattened to get them to the slaughter so much faster, (you may have heard the cliche - you are what you eat?) . They now call those regimes 'antibiotics' however, they could and should be called growth stimulants (Hormones etc), in my view...
I try to always only have seafood that is wild-caught, however, that can also be a challenge these days are most table fish (salmon, tuna, barramundi), some crustaceans, & even oysters are largely produced on farms these days...
Love vegetables, (homegrown or the more organic the better), and select fruits that are lower in carbs generally too... No breads, no rice, no potato... On top of this I am also now doing some intermittent fasting 2-3 days pw. On those days, I only have circa 600 calories, give or take etc...
It is a tad tough at first, however, when I first tried to undertake intermittent fasting, my spleen was larger & making me feel most unlike food. Hence, it was actually easy to get myself into the swing of things...
I do not have b/fast, or lunch... just my evening meals, black coffee, greet tea w/ lemon/lime, & sparkling minerals water, (only drink filtered fresh water too).
No soft-drinks ever, no longer having my grape preserve with my evening meal (yes no alcohol at all since February 2018).
It might all sound a tad tough, however, after a while it simply becomes a tad easier...
I do have some mineral/vitamin supplements even though I prefer to find them in the foods that I consume.
There are many schools of thought out there concerning – intermittent fasting –
If you are interested, I might be able to forward you a few articles? It is not going to be for everyone, however, I am just me at this stage...
Hope my response did not scare you off too much...?
I also never have any added sugar...
Every so often, I do have a treat of some description, (ice cream, dark chocolate etc), however, it's easier just to abstain, the trick is knowing how & when to stop!
I was very pleased to read your post. It is wonderful to read about your wide ranging research. I have saved it to reread and understand better. Our consultants focus on the MPN and the wider contributory factors are not always known or thought relevant. So your post really helps those of us who wonder about them.
Lovely to meet you, (virtually speaking of course)...
Yes, it is so overwhelming too for most of us when we first start to learn about our various malfunctions etc... and all the ghastly permutations that might be implied... (?)
However, that is when we should allow our philosophical bent to kick-in... None of us have an immortal pass to the Milky Way, not that I am aware of at this juncture in any event...
As Shakespeare likes to remind us, someday "...we shall shake off this mortal coil..."
Hence, best to endeavour to work with whatever we have here & now, in my view...
In the event, I am mistaken, and my MF deteriorates more rapidly at some not-to-distant juncture, and it then becomes necessary to undergo an ASCT, then, my physical, mental & emotional condition will thus be far better equipped to handle the rigours of the pre/post - treatment regime to suppress my immune system to allow for engraftment to take place while endeavouring to avoid an acute/chronic case of GVHD etc...
And, in the meantime, hopefully, my quality of Life (QoL) will continue to make new headway ... such is my hope
Hi Steve, thanks so much for sharing this information with us, it has been enlightening and made me feel really positive, as it it heading in the same direction as my thought processes regarding this disease. I have recently been diagnosed with ET, CALR mutation, but the onset has been gradual and the onset of symptoms I have put down to lifestyle and age, I am 49 and my platelet count is increasing and currently 1200. I have alopecia universalis and I am convinced that the two are linked even though my medical team believe otherwise. In 2014 I had what was believed to be acute allegic allveolitis and had clots on the lung which in turn caused a minor left ventricular systolic dysfunction. Platelets were then 700 but where never investigated further. I am now on a diuretic, even though I have an historically low BP and now thanks to spironalactone my potassium levels are elevated. I also take 75 mg of aspirin a day. My haematologist wants me to go onto hydroxycarbomide and decision time is 21 August. I have a good BMI and am fairly fit and have a firm belief that fitness and healthy positive attitude will get me through the symptoms of ET, rather than using my energy to beat the side effects of medication. Thank you again for sharing your experience and am so pleased that you are doing better. Penny
Wow, you really have been through some tough times...
My original diagnosis was also ET, and as you know I am also CALR (Type2), with the ASXL1 mutation along just for the fun of it I guess...
It was my original BMB, (May 2016), of Grade2 that saw my MPN reclassified. I also could not tolerate either Hydroxyurea (HU) of Interferon Aplha, and was eventually moved onto Ruxolitinib, and felt an instant improvement of my symptom burden. However, as I said previously, I still have many unwanted symptoms...
Penny, have you ever had a Bone Marrow Biopsy (BMB) as yet? It might be worthwhile to learn whether or not you are suffering any scarring or fibrosis etc?
My platelets are also always quite high, and apparently that is in keeping w/ CALR Type2 mutations. Are you aware of which type you are as yet, (1 or 2)? Ask your specialist, they should already know at least that much... As this might also be part of the explanation why your platelets are so high... I have already had two (2) minor brain strokes (TIAs). Interesting experience, but I would rush to buy a ticket for that ride... I found being trapped inside my non-compliant body quite an astonishing fascination, and a tad apprehensive I guess...
When were you first diagnosed Penny? I am 59, btw, and there is a school of thought that if any ASACTs were to be performed, (at some stage), it is best before we age much more than 65... However, again, I believe that too is dependent upon one's physical health & fitness...
Sounds like you are already on the right track too... Very well done!
Do stay in touch Penny, and feel free to ask any questions you might have. I am not a medical person of course, just another person w/ an MPN just trying to enjoy the moment.
It's all just another adventure really, is it not?
Thanks for the reply😀 I have only just been diagnosed. So have through a fair range of emotions, but happy to realise that the symptoms were real and I was not just making it up. No BMB as yet and not sure os the CARL type but I am devising a list of questions. As you say not the most pleasant of experiences here, but life is for living, so making the most of everything that I have. Take care😀
What a positive and uplifting post. Your determination regards diet and exercise is to be greatly admired. It must be so hard to keep motivated with exercise when your body is saying ‘no,’ so a deserved well done to you.
I also stopped drinking alcohol at the point of diagnosis, although at some celebrations I’ll have a glass of wine to be ‘sociable’ under pressure, but I can honestly say I don’t enjoy it in the way I used to. I don’t know why that is? Your diet is pretty restricted, I don’t know if I could give up so much, that takes true determination. I don’t eat too much meat but I would miss a lamb curry 🤔
It’s amazing that your latest bmb is showing a reduction in fibrosis from grade 2 to grade 1. I bet you weren’t expecting that; you must be feeling elated with this news. Is this an unusual finding in MF ?
Thanks for all the research you expose us to. I will at a later date try and source the articles you have posted.
So pleased to read your uplifting post. Can’t remember, have you used Interferons?
This is useful summation of Pegasus trials which, for a subset, have shown molecular remission and reduction in marrow fibrosity. Dr Silver claims success with early MF patients and some are benefiting from Peg/Ruxo combos.
Nice to speak with you, feels like it has been a while since our last virtual chat...
Apparently, and to be completely fair, there is another side to this quaint tale of some well-earned glee... There are more than a few journal articles out there that suggest – Ruxolitinib has been known to produce this type of result, upon occasion.
However, when scanning such articles for declared 'Conflicts of Interest', invariably, one or more of the authors has received funding, (directly or otherwise), from one or more of the major pharmaceutical giants ... whose names shall ne'r be tainted... of course...
In this world of market-mentality based economics, we are more like sheep through the healthcare system shunts, in my view...
Hence, all so-called claims must be weighed & tested...
Thus far, from my own lens perspective, I remain yet to be convinced of their collective altruism. However, I might be completely incorrect of course. So never take my word for anything but rather always seek & research opinions for yourself...
Thank you for your post. I have read with interest. I am Type 2 ET Calr+ve with grade 2 fibrosis also though 52.
What has interested me recently is where the calr mutation spreads. Apparently it spreads and affects the cell glycolysis. This is unpublished and should be taken with a pinch of salt but may add to the lack of energy we feel.
Delighted by your news, and the improved results. It was great to hear more of your own history too and good to get to know you better. Thanks for taking the time to write up what you have been researching and trying, it is fascinating. Cancer as a metabolic problem is a very interesting approach. I'm off to town this morning so will have to wait before I get a chance to look at the references you have provided, but I am most thankful for the stimulating food for thought that awaits! I am so pleased for you.
Wow Steve so happy for you! The obesity part how long did it take you to lose all these kilos? I find it very difficult to lose weight even with strict diet (but not much exercise) 🙄
Well, that's a tale of two parts really, as I first lost my excess baggae rather quickly w/ the ketogenic diet (Low Carb' - High fat). Initially, I speculate the loss of circa 20kgs took me 12mths. Then, I went up & down a tad before settling back down to my present weight. However, I seem to be at a bit of a plateau at the present, my next goal is to endeavour to shed another 7kg in approximately the next three months...
I realise that it can be extraordinarily difficult to find a diet plan that works, and I am not trying to say that this experience has been something akin to waving my magic wand... (I wish)< it has been largely hard work and an ongoing struggle to persist, and stick w/ it...
If I can do it... anyone can, is my firm view... But I guess one has to really want it too...
We are all a tad different, and all of us have different demands on our time... However, we w/ MPNs, have other imperatives... This is not about our narcissistic aesthetics, but rather our longevity & our ultimate survival...
Nevertheless, feeling better about how I look and feel for myself is a wonderful sense of achievement that helps me keep a bigger smile on my dial...
Hi Steve. I can't but applaud you for your relentless research which will hopefully help us all. So sorry that you are having problems. - haven't quite taken it all in yet - brain fog" what I would like to ask you is are you following this food regime to lose weight or that you believe (or have evidence) that your diet actually affects our consisting. I have read a few items stating how convoluted our systems are and are all probably linked somehow. I have ET but not sure which JAK it.is - 1 or 2 plus CALR which according to a "specialist" is the least problematic. You say you are now able to cycle fair distances..I can't even walk more than about 200 yards despite continually trying. I also have CFS - how lucky can one get - but want to do as much as possible to help myself. Frankly I've lost faith in the medical profession in respect of our conditions. You probably know more than they do. God Bless you for all the time you spend researching and passing it on to us. Is your haemo. Aware of your regime? You mentioned in one of your replies that you. Old send details of your diet regime. Is it possible to give more more information? Don't think my weight is an issue - 160kg - but am very keen to try your ideas. Thank you once again for the amazing work you are doing and passing on to us.I hope you will let us know regularly how you are doing and believe That we are all so grateful to you. I send you prayers and hope. Mary. PS. Wish we could talk on the. Phone. Would love to get to know who this amazing man is.
Lovely to say hi, & thanks for your email. Sorry also that it has taken me so long to respond, however, and in my own defence... You do ask many questions and make quite a few assumptions on my part... Hmmm... ? Where to commence?
Firstly, losing weight, is my mind, paramount to assisting us all w/ our various MPNs, whichever one we might be affected by, and along w/ all the other comorbities which might be in tow...?
For when our dietary regimes get somehow 'out-of-whack' our cells can receive and impart different sets of instructions to those they once did. In order for those cells to feel as if they will survive they can henceforth, rewire themselves which in itself can create far more ramifications...
However, and I must caution, that this is in my own lay-view, as I am but a patient here, and definitely NOT a medical person. Hence, anything I might utter as a possibility is really just that, and also an untested theory, for the present.
I feel that it is really important that I stress this point, while it may be true that we exist in a world largely dictated to via economic pressures & market mentality, the medical fraternity must study long and relentlessly in order to achieve their titles, whatever they might be... And I would not wish for anyone to go against their medical team's advice based upon my untried assertions etc... I hope I am very clear on this point Mary...
Everything have asserted in my original post, is simply based upon the findings of my own journey ... thus far... How much this might change into the future at this juncture is still anybodies guess, is it not?
I also started out w/ an ET diagnosis that later changed due to my Grade 2 fibrosis (BMB 2016 result). Which as you know, is only Grade1 today (recent 2018 BMB result).
I am also CALR Type2, which is different toType1, however, some believe that it makes little difference which type one is. Type2, which is my flavour, is said to affect people slightly younger, and cause higher platelet counts, and mine are rarely below the mid 7s.
You might check also w/ your Haem' about your own mutations as I didn't think that one could be JAK1/2 & CALR at the same time, however, I might be mistaken of course...
My exercise regime, didn't not eventuate overnight, nor would I describe any of it as an easy thing to do... Hence, it might not be for everyone, and to answer your earlier question clearly – I believe that our individual metabolism is somehow linked to our MPN conditions/mutations getting out-of-whack in the first place, however, I cannot prove this at this juncture as I stated earlier...
When I first started, I was much like you say you are today... and I could barely walk 1km, (or cycle more than 3kms), w/out being seriously out of breath. I was overweight then too, and seriously so for myself, as I was my heaviest ever – 125.7kgs. It was and still is a long journey coming back. Fortunately, for me (& not others whom I know), I did not succumb to diabetes type2. Which would have made things far more complicated again.
I still am quite breathless, as I am moderately anaemic, a condition known to cause breathlessness... Sometimes, I can have slight nose bleeds, and I must always watch my platelets very carefully as I do not want another TIA, (minor brain stroke), of course...
I do not go into great detail with my medical team at present, (concerning the detail of my fitness or dietary regime), as they are mainly concerned with monitoring my blood counts periodically, and thus far they are content. My Haem' did not like my assertion that my exercising might be more responsible than my meds' for my molecular improvement, and remember Mary... I might still be incorrect. However, that is not my present belief structure, at this juncture is all...
My dietary regime is not for everyone Mary, as there is a great deal of 'Intermittent Fasting', and that is not always beneficial for some... Best you run that question by your medics first to see what their thoughts might be on the subject etc... Best to be a tad cautious here as I mentioned earlier, they are indeed most learned people.
Mary, I am also aware that in the UK, you guys still use the imperial system of measures, whereas we here in Oz utilse the metric version... So is your weight 160kg or 160lbs? Which would be more like 75+kgs?
Anyways, best to see what they think about your 'Intermittent Fasting' before you start ploughing down that road w/ me... It does take a bit of getting used to I must warn you Mary...
Finally Mary, thank you for your complimentary descriptions, but really, I am just another MPNer who is simply trying to manage this journey in the best way that I can...
By staying as positive as I may, and hopefully by always being able to laugh out loud at the foibles of our humanity, we can be such fascinating things us humans, can we not?
Best wishes Mary...
Steve xo
PS. For a really good belly roll, pls read loads of Stillkicking's Posts – Peter is always such a cheerful person and always breaks me up with his marvellous words-smithing skills. Such a treasure here on MPN Voice/Healthunlocked etc...
Great write up, thanks for sharing. A year ago I would have agreed with you all the way! Sadly after feeling the fittest I had in many years after 3 years of healthy vegetarian eating and regular excercise, sometimes over 100 miles a week. +CX training. I became very unwell very quickly with parsonage turner syndrome, eventually resulting with a diagnosis of MF. I seem to have gone down hill very quickly since May! I now eat and drink what I like as I feel it didn’t help at all! I am though glad it has worked for you and hope it continues to do so!
Well that was a fascinating topic to brief myself on too... 'Parsonage Turner Syndrome'
Interesting too, as some time ago now I suffered from a short fall (crashed my cycle unceremoniously after being chased/tailed too closely by a driver into a chicane)...
My RH shoulder was suddenly more painful than usual. I say that because I have always (for many years) suffered pain in both shoulders but always more in my RH, I am RHanded though too...
After some remediation via my Physio' at that time, (he said Chinese doctors call this – 60yo shoulder - I am 59), and he informed me that this type of injury might last 3-6 months mainly due to my age, and the fact that most people with these types of injuries don't work hard enough on their recovery, for whatever reason...
I recall that the pain was quite unbearable, and I do still struggle (more so w/ the RH side), however, after much time has now passed, and w/ my exercise regime, it has improved markedly, but I am resigned to the fact that its not going away completely anytime soon... (or so it would seem?).
It is even more interesting to learn of how much it is all connected to other physiology and how that might too have also been a factor in another previously undiagnosed condition that was akin to Raynauds disease, the cutaneous elements of both my hands were once yellowing in colour, and became quite inflamed and more and more brittle...
After suffering w/ that condition for more than a decade, my original diagnosis of my MPN, saw me taking 100mg of aspirin daily to stave of clotting and improve my circulatory system, and it really did just that, and my nails returned back to normal after all of those years... astounding really.
After a quick read concerning how 'parsonage turner syndrome' affects the 'brachial plexus' connections of parts of the spinal, and central nervous system, it seems apparent how much of this becomes engaged/connected via this condition, just biomechanics alone I mean of course...
The 'brachial plexus' is connected to much of the nerves that carry signals to all of the related muscle groups, and neuralgic nerve centres... (perhaps why I also suffer so much minor paralysis in my arms from time to time... (?)
In any event, while my shoulder/s do still ache for the most part, they are improved generally, and they were my likely (in my case) first ruptured through sports (cricket in particular but also paddling a surf-ski). With and since my exercise regime commenced, (bit of a roller-coaster), however, overall... I am much improved, but it is not ever easy either, and I do have to try to stay consistent, as soon as I slide on that consistency, so too does my level of strength & fitness, and my breathlessness almost instantaneously returns...
Best wishes B, and I hope things can improve for you too shortly...
Hi Socrates, I found your post very interesting. Low haemoglobin is a problem of mine. I have all the ingredients but when at my best it hoovers 111-117. I constantly try and up my iron intake which after reading someone else’s post think maybe I shouldn’t. I’m now slightly above the upper range of ferritin. Could this in itself give me fatigue? Everything is such a chore. I take 3times as long to do normal chores.
Low Hg, in my instance, is generally a result of my anaemia degrading, and one result of the anaemia is starved oxygen levels to the red blood cells, which in turn can cause breathlessness, and light-headedness...
However, we are all a tad different too. Iron levels might play a part in your case, whereas my iron levels are always quite good really...
During the course of having this MPN condition, I have come to learn that many of my symptoms are actually symptoms of the MPN, whereas some others, I believe might also be side-effects of the drugs that I must take.
HU, was intolerable for me personally. The mental cloud was frighteningly disturbing. However, for many others here, HU, is a miracle worker... Ruxolitinib seems to provide me with the most relief at the present moment...
However, if your Blood PLatelets are way down to 456 (normal range c. 150-450), I would be cheering as there is far less likelihood of you having a TIA (minor brain stroke), with your Platelets almost back in the normal range again.
I am also CALR+ Type2, and apparently high platelets such as mine are a characteristic, (c. mid 700s-1M), and therefore not so unusual.
Nevertheless, it is somewhat disconcerting as I always feel that I am living/surviving on the edge with such high platelets... Already had two (2) previous TIAs, and don't want anymore...
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Had f/u with Hematologist 
