Hello all ...hope everyone is keeping safe ... the last time I was around I was dealing with inflammation ... could hardly move without 😢 crying..which had been diagnosed as RA ... I already knew from our site my symptoms were due to my MPN ... today confirmed it ... Why have I had to wait so long to confirm this when apparently I’m surrounded by experts ??The cure for RA which was announced today ... saying Jak 2 is responsible for inflammation....which was all I needed to know ....no mention of MPN ...but the Jak 2 mutation was enough .... my concern is why the Haematologists have told me on numerous occasions there is no connection between MPn’s and inflammation... I have just emailed my haematologist today ... saying how can I have any faith in my heamo team ...when their knowledge seems to be so limited ....Also our Maz told me there was no connection between Mpn &inflammation... just feel frightened as to who really does know anything about this blood cancer ???I am going to do so much more research and rely on me as regards to further enquiries around health issues....also keep connected with all the informed others on this site ...hope this is helpful ... so grateful for you all .. love and peace ... Lainie xxx
Lack of Knowledge from the Haematologists. - MPN Voice
Lack of Knowledge from the Haematologists.
I can imagine how frustrated you feel .
Send the Haematologist a copy of this article . Tell him you await his professional opinion with interest!!!!!
Let us know response if you do send it !
It is a comfort to have this site and share our joys and frustrations
Xxx
I recently have a friend diagnosed with this. Only then did I realise how important early diagnosis is. I do hope your pain eases soon.
Regarding linking it to an MPN. Science doesn’t have all
the answers.
Looking at the early protective clothing scientists wore whilst testing the A bomb proves that.
Maybe your case will highlight a possible connection.
Hi Melanie66, Thank you for your information and sharing your experience with us. Years ago (4-5 years) I came up on some research and it was published on connecting inflammation with MPN's. I posed this question to doctors on our annual meeting that we have every year with medical professionals in MPN in Guys hospital and I was told that was not true. Thank you for confirming this connection between MPN and inflammation. It is now very well known that cancer is caused by inflammation among other possible causes. I myself suffer with OA and lots of inflammation and years back was told that hip OA ( had total hip replacement), is caused by wear and tear. What an ignorant statement by medical professionals.
Wishing you well.
Fantastic hearing this ! I can hardly walk as my legs are soooooo painful. I also now have to have a hip replacement at 60yrs, as they have both gone down hill in under a year. Going to try and get referred to a specialist as my hematologist just sent me to Orthopedics !!
Hip replacement needed age 52, now attributed to my ET, undiagnosed for 10 years or so until earlier this year.....
Shame there are some haematologists still not up to date!
This is so good to hear that someone has had the same problems as myself !!
I know I am not alone ... Lainie x
I’m so sorry to hear of your pain .. it’s so unbelievably painful .. I know ...wishing you peace and healing .Lainie x
Hello I suffered from horrible leg and foot pains and it was greatly affecting my life. I'm only 43. I got on cymbalta and it was a game changer for me.
Melanie66, the master antioxident in the body is glutathione and is usually low in MPN patients. Curcumin is another anti inflammatory that is also a JAK2 inhibitor. A liposomal form increases the absorption level otherwise poorly absorbed into the bloodstream by itself. Consult with a health care professional before using any supplement.
researchgate.net/publicatio...
Who can be made accountable for the harms caused by misdiagnosis and/or delay in diagnosis? And how?
If the patient/client files a formal complaint and reports this kind of malpractice and misconduct, the jury in the college of physician who investigate the case will be friends and colleagues of the doctor. That is the reason doctors don't care about their practice, knew well they are entirely immune to any discipline and unbiased judgment.
It's not always like that. I had a very positive response when I had cause to complain and I got the outcome I needed very swiftly, as well as support and sympathy from my new doctor.
Good for you .. It was not the same for me .. Lainie
For Otterfield ... I did not mean to sound unfriendly..that was not my intention..I have had good conversation with Dr,s Heamo’s ...Staff ..Until the inflammation began ...it was then that all changed ...I suppose there were other times that I had been unhappy with their care .. advice etc ...but generally ok ...I hope your positive care remains but please remember not all of our experiences will be the same ... Lainie x
Oh brother. MPNs are at the core inflammatory disorders. That is not well understood. There are so many studies and presentation on this I will not even bother with all the references. I will suggest - it it time for e new hematologist. If your current team is not bothering to stay up on the research and are not current on the thinking about MPN s - fire them. Get someone else. Here is a list of docs with the requisite knowledge mpnforum.com/list-hem./ ..
Oops - just saw typo. That is NOW well understood. I do hope you find a doc who actually understands MPNs.
Here is just one of many sources on the role of inflammation. There are too many to send them all.
Thankyou ... appreciated..Lainie
Hi Melanie66 I can understand your frustration and I am so sorry you are feeling like this.
My name is Marilyn, I’ve had ET for 11 years and I’m one of the MPN Voice team (Maz is having a well deserved rest this week).
As you can understand every bit of information, comment that we give on this Forum, as the voice of MPN Voice, has to be 100% accurate . There are so many amazing Epidemiology studies currently ongoing, The connection between inflammation and MPNs is one of them. The article listed below is based on experimental, clinical epidemiological studies. (Published October 2015). As it states in the study, the most recent study spoken about, was based on 100 patients. In the conclusion of this article, it talks about ‘The Concept’.
I am only highlighting these points, to try to show that ongoing research is happening.
MPN Voice can only confirm, give advice on information and Medical advice given to us by our amazing Professional Medical Team, headed up by Prof Claire Harrison of Guys and St Thomas London.
Our aim is to keep our MPN Voice community fully informed of any major development. But it is also imperative that the information we give is factually correct.
If and when the connection between MPNs and Inflammation is 100% confirmed. We will definitely advise our MPN Community.
It is fantastic that our MPN Community have this wonderful forum to be able to discuss, let of steam, ask for advice and help, or just have a chat.
We will always be here for you, but Maz and I can only confirm things that we know are 100% confirmed.
Keep well and safe Marilyn
Thankyou ... you keep well and safe too .. Lainie
Hi Melanie66 I’ve been in contact with Prof Harrison and she has asked me to add another point.
It’s important not to conflate the issue of MPN causing inflammation ie arthritis. Inflammation being part of MPN is undoubtedly well observed. JAK inhibitors are used for some types of arthritis and inflammatory conditions. This is because they have an anti JAK1 effect, not because a therapy for MPN will reverse arthritis.
I hope this helps.
Keep well and safe
Marilyn
Thankyou .. but my point was ... when I asked was there a connection between Mpn and inflammation... I was told No ... so of course when I discovered that was not so .. I was so frustrated that I was not heard or whatever happened .. but I had actually asked twice ..same answer ... this was/is my issue ... anyway resolved now ... Lainie ... who
The point keeps being missed ... the point was /is ... why when I asked was there a link between Mpn / I was told No .. on 2 occasions ... Lainie
Hi Melanie66 I am really sorry about your frustration, which I can understand. At least now it has all been resolved. Have a lovely weekend. Marilyn
Thankyou & you ...Lainie x
Hello. There is a documented link between MPNs and inflammation. Our cytokines are angry. Here's just one paper on it. And yes, many hematologists only know the bare minimum. Hematologists also like to ignore our complaints of severe fatigue, bone pain, and many other symptoms. I trust no one.
JAK2 Allele Frequency/Burden
Question for MPN patients in Canada
Inflammation increased by Peg?
