Hello, Happy New Year !
Please do you know if it is ok to take Omega3 supplements?
And also which supplements would you recommend? I am vegan so don’t eat any fish and I would get vegan Omega3. I take vegan vitamin D.
Thank you very much, this group is amazing.
Warmest wishes
Koula
And a very happy new year to you and yours also Koula... 
As you may already know, I am also back to a 'Plant-based' only diet after previously having been pescetarian for many years...
Have to say, that I do miss the texture of having some seafood in my diet, and I do sometimes relent just enough to indulge myself every once in a while, (like when my daughter recently decided to buy me a seafood salad, when I've not been eating seafood for a year or two now...). Couldn't allow it to be wasted though either, could I? That would be criminal in my mind... 
Anyways, I do take some supplements myself: Vitamin D, because I always seem to be deficient if I do not. Vitamin 'B group' a few times a week, and the same with a multi- Vitamin... All just so I am hopefully not deficient in anything...
However, I am struggling right now... My health seems to have taken a bit of a nose dive of late, and I am trying to understand why at the present... (?)
I suddenly developed a numbness in my left leg, that became so bad that I needed assistance to walk... (literally needed a walking stick), and this is after years of cycling, keeping a strong and healthy diet, (most of the time), and presently... I am at a loss to know why or what has caused this to occur?
Nothing really in my CT scans, (Poor back architecture ~ age related mostly), I will have Ultrasounds this week and see my physio' to ask what he thinks might be happening... (?)
Generally, all my joints have been very poor now for quite some time... My shoulders, and arms have been the worst, along w/ periodic severe back pain... However, this left leg seems to be more a pain associated with my left hip... (?) And sometimes, it's just numbness and non-supportive yet very little pain at all.. (?)
I decided not to ride for a while until I can glean some likely answers, but I will try to do a short leisurely ride this week after my ultrasound has been conducted, and then maybe another in a few weeks time after having ridden for a week or two, to see if anything obvious shows up etc...
Good luck with finding out about those vegan supplements Koula... And do let me know how you go...
Best wishes
Steve
Hello Steve, thank you for your reply and for sharing. I am so sorry that in spite of a healthy diet, exercise and lifestyle you are having pain and numbness and problems with your left leg.Please let us know about your scan and hope the physio will help. I hope that you find the cause and treatment, I have a painful left shoulder and my left toes are numb for years. I drink turmeric and ginger tea hoping it helps. A couple of years ago I started running but stopped after a family death. Now I walk my daughter’s dog but hope to start jogging. I will order some vegan Omega3.
Take care.
Hey Koula...
Thanks for your reply... Somehow, I do believe that all my joints and bone pain are indeed connected to my MF. However, I am willing to listen to all advising, and hope to learn through the sharing w/ each other we all do here via our MPN Forums etc...
Please do let me know how effective you find your Vegan Omega 3 supplements (?)
Best wishes Koula...
Steve
You are welcome. Thank you 🙏 for all the information you share with us. Warmest wishes.
Hello Steve. I have been a Traditional Chinese Medicine Dr for 30 years. I have specialized in severe chronic and acute pain for the last 8 yrs. What I can tell you in my clinical experience is that a high carb diet leads to inflammation especially of the joints. It would appear that vegetarian and especially vegan diets are based on high carbohydrates intake and it doesnt matter what form as they all spike insulin and it is the spikes in insulin that have a cascade effect into increasing inflammation in the body especially showing up as joint and muscle pain. I am not suggesting your leg numbness is this but certainly could be exacerbated by it, and the involvement in the general joint pain etc. There is the vegetarian keto diet that greatly reduces these spikes and stabalizes the insulin, and will always reduce joint inflammation I have seen this played out in hundreds if not thousands of clients over the years. I hope this helps somehow for you to think about your pain and do further investigation. I can recommend dietdoctor.com website which is all things keto and low carb, and run by extremely knowledgeable drs and nuritionists and so many fabulous interviews with many specialsts etc in the are of keto.
Hey evening AnBee...
Noticed that you recently signed up to MATES MPN Forum in Oz too... So welcome aboard as well...
Your explanation concerning Carb's and higher levels being derived via a 'Plant-Based' diet seems logical to me too... sadly... as I have been enjoying some of my newer recipes...
Initially, I went down the Keto diet path, w/ some success but eventually found I was not getting enough healthy forms of protein, and I believe that I may have suffered from some muscle mass loss during that period. Then, I returned to my pescetarian diet, and tried to only consume more carbs when riding longer distances the next day, (which was pretty much all the time really...)
So it was hard to really find something I could stick to that seemed to work for me with my cycling etc...
I then studied some of the information provided via the "GameChangers.com" website, and found that really helped me get back on track w/ my weight loss and muscle mass, (also doing some off-the-bike), core building exercises, and all of that seemed to be working...
Then I started to notice I was suffering more from cramp, and more so from really long hot rides... Just recently, I have started taking more hydration tablets the night before, and then more in the AM (90mins-2 hours), out before my Rides...
All of that seemed to be helping but my muscle mass kept diminishing some, and then after one longer Ride in particular, my cramping returned along w/ the numbness happening particularly in my left leg... It was more like a Stroke in some respects, and so I had some late tests done for that as well, (all negative ~ even though they were possibly performed too long, Post the event etc?)
I learned some time ago, that there is such a thing as RWS (Ruxoltinib Withdrawal Syndrome), and that this can occur from titrating my dosage, which I have been known to do as my stubborn Platelets remain closer to the 1 Million mark than I would prefer they stay well south of that marker...
The other night, when this last Leg Numbing event transpired, I have had to start using a walking-stick, and the aches and pains I have in all my bones and joints, since then, is just as rare and exquisite as having an MPN... The pain is quite excruciating at times...
I will be having more tests this week, and after that I will try to ride my bike... at a very reduced and easier pace...
I cannot accept the possibility, that now I have reset up my new "PLAN ~ B" for my "Cycling For A Cure" Fundraising Ride from Sydney to Coffs Harbour, that somehow my body is conspiring to prevent my doing so...
So i will restart very slowly at first, and try to discover other ways by which I might see this event through, which is due to take place in early April, 2021...
Wish me luck guys...
Best regards all...
Steve
ox
Hi Socrates, sorry to hear that you are having problems and certainly hope that you find answers very soon so that they can be addressed. Always enjoy reading your posts and the perspective that you bring to the conversation. We all appreciate everything you are doing to bring light to the mpn battle and hope you can continue to do it for a very long time. Good luck to you and keep us informed. Best always.
Hey there Meatloaf9...
Morning from a truly beautiful blue-sky morning here in Sydney...
Thank you so much for your compliment & encouragements... Really, I am like so many others here, simply trying to understand how best to live with and hopefully, "Improve" on our / my Quality of Life... For all of us who are affected by an MPN...
CV–19, just makes that equation so much more the challenge, does it not?
By comparison to you guys in the UK, USA and pretty much everywhere else globally outside of Australia /NZ... (for CV-19 wise, we seem to be doing so much better...)
The stories I am constantly hearing coming out of the UK, Europe & the USA, are just mind-blowing... It must truly be so hard to cope with CV-19 out there...
Naturally, our hearts go out to you all right now... This bug has a way to go as yet, and its affects are so incredibly devastating...
Hopefully, we will all emerge after these Vaccinations continue to roll out, as stronger and evermore resilient... Such is my ernest hope & desire in any event...
Please stay safe, happy & well and please keep looking for those sublime moments of ironic humour, that might help us all remember, that this time to shall pass... 
Best wishes all...
Steve
Hi Steve, yes it could be something not related to lifestyle at all with that indepth background. I truly hope you find the answer to it and can engage in your cycling for a cure. We are all so unique in our expressions of these disorders. Good luck
Thanks Anbee...
If I stumble upon anything new that might aid me some, I will be sure to let you know too...
Steve
Hi Steve I am new to all this having only been diagnosed with ET last month . I also have the same issues with my left leg pain and numbness particularly in my hip and ankle . Asked the GP and was told it’s probably arthritis !! Which I find a bit hard to believe . So very interested to follow your story and to hear what the outcome is for you .
Hey Muchalls...
Yes, I have also tried exploring the Rheumatic arthritis question too... There is a test that one can do to all but rule that possibility out, which I also have had done etc. (negative result)
However, the Hip, and really ALL my joints and bone pains must have a cause & effect, as I believe all things do... scientific and theoretically speaking of course...
The RWS I mentioned above may be playing some part in this MPN (MF) journey of mine... I suspect that this may be so... But I don't know that at the present either...
I am actually now considering arranging to have another BMB, (which would be my 3rd since diagnosis - 2016). However, if my BMB suggests that my MPN condition has grown worse... well that might indeed explain everything in a nice little neat nut-shell... (?)
I will let everyone know when, (and if I learn any more...)
Thanks again for your your response...
Stay safe, happy & well...
Steve
Hi Steve Thanks for the reply , I’m still feeling a bit shellshocked from the diagnosis as it was a brief 10 mins with the doctor and was then just given a leaflet to explain ET , prescription for aspirin , which he informed me will be reviewed later in the year to probably change , but to what I don’t know , and told he will see me again in 6 months .
It’s nice to know there is a group like this which gives support and gives me an insight into the condition .
So thank you again and I’ll be interested to follow your updates
Jill
Hey Jill...
Yes, it was all a tad overwhelming for me at first too... And that was precisely why I felt compelled to start an Aussie-based MPN Forum website because there just was really nothing, when I was diagnosed in 2016.
MATES MPN FORUM (it's FREE to join of course)
mpn-mate.com/forum/viewforu...
Here are some Links that might help you w/ your understanding of MPNs:
mpn-mate.com/mpns-what-are-...
And this one too...
mpn-mate.com/essential-thro...
Jill, it's also really important to find the right medical team... Remember that MPNs are 'Chronic' illnesses and we are going to have them for quite some time, and I believe that it's really essential that we have people who are knowledgeable and up-to=speed, with all things MPN, in my view...
mpn-mate.com/mpn-doctor-rel...
Jill stay safe, happy & well...
Best wishes
Steve
Thank you Steve ... your words are much appreciated Jill
I eat a whole food plant based vegan diet, I take d3-2000, b12, and vegan omega 3 daily along with flaxseed in my oatmeal daily. My doctor knows I take them and has not said anything. When I asked my hematologist if I needed to worry about supplements or taking otc allergy or pain meds she said no.
Vegetoly make a good vegan omega supplement called opti3, I can recommend them. Their vitamin d is also high quality.
Thank you very much Rebecca, I will look for it.Take care
ET and taking iron supplements
ET and iron intake and supplements
Do you have any supplements you think helped JAK2+ patients?
magnesium supplements 
Ferritin test
