Mpd symptoms

Hi can anyone tell me of any symptoms .if any they had before bein diagnosed with Jak2positive and ET please im 62 in uk 😊

[mol56]

I have E.T. JAK NEG. I was diagnosed 10 years ago when I was 54. My symptoms were extreme fatigue (I thought that I might have M.E.) even my elderly father seemed to have more energy than me! A lot of headaches that were more like pains in the head rather than migraines which I had suffered from for many years. I also had a pain in my foot which woke me up and I felt dreadful for a few days and could not put my foot down flat on the ground. I was also going through the menopause and some of these symptoms seem to be similar to those experienced by MPD sufferers.

My G.P. sent me for a blood test and within 3 days, he had been to see me to explain about MPDs.

I also experienced burning in my hands and feet.

[Hidden in reply to mol56]

Hi mo156, i have been feeling very fatigue alot, and get headpain , i also been getting discomfort in abdomen on and off , it worrys me that im positive to jak2 😞

[mol56 in reply to Hidden]

Have you been diagnosed with a MPD?

I don't know whether it makes much difference if we are JAK NEG OR POSITIVE.

I have been on hydroxycarbamide , asprin and lansaprazole for 9 and half years and my treatment did not changed with my JAK result.

[Hidden in reply to mol56]

yes i see heamatolgist on 29th my platelets been high for a while she said i have ET and then done the Jak2 test in march so she brought my appoinment forward now thats positive i been taking Asprin and lansaprazole for a while anyway because my own Gp said im at risk of clots .i think i may also at some point have a bone m b have you had that done ?

[mol56 in reply to Hidden]

Yes, I had a bmb done on my 31st wedding anniversary 10 years ago! It was a uncomfortable but not particularly painful. I also had an ultra sound scan of my spleen area to check if that was enlarged. I haven't had to have a repeat of either of these tests. I also gave a considerable amount of blood for research purposes to be sent to Addenbrooks Hospital, Cambridge.

Good luck for the 29th.

[Hidden in reply to mol56]

Did you that was a memorable day eh, so its good they only do test once in most cases Thank you for feedback it does help , im in kent uk and theres no help support groups , also alot of people have never heard of MPDs 😞

[Hidden]

I have ET and m jak 2 positive. I experienced extreme fatigue, lots of headaches. I had a portal vein thrombosis and was diagnosed after being in hospital for that. I did have a BMB which helped confirm my diagnosis. I was very anxious before I had it but it was ok. These tests never pleasant but for me it was painless if little uncomfortable. I was 52 when diagnosis and although I had been through menopause thought it had come back! You are right some of symptoms similar. Oh I also had night sweats too. Liz C

[Hidden in reply to Hidden]

yes agree i have night sweats at time and im now coming up 63 so well over menopause i guess being i was 51 with that . will have a long chat when i go to hospital in 10 days time , and ask more questions

[Hildrethbird in reply to Hidden]

You sound we went through 100% same story !!

[Hidden in reply to Hildrethbird]

Really !

[Hidden in reply to Hildrethbird]

Not that I am glad you went through similar but it is nice to know we are not alone! Hope you are doing ok Hildrebird xx

[lizzziep]

I didn't realise my symptoms were caused by the ET, I thought I was just getting old!! I felt tired all the time, I feel somewhat better having been on the HU for 18 months. I still get the night sweats occasionally.

I had a bone marrow biopsy to confirm I had ET. They give you gas and air while you have it (wouldn't let me take any home!) It wasn't really painful, just felt a little tug, then off for a cup of tea and a biscuit (best bit).

I am also on aspirin and lamsparozole (can't spell it). I also take paracetamol for arthritis pain. I do need 2 knee replacements but am terrified of the operation, so am putting up with the pain until they can do stem cell replacement - I may have a long wait!

It is very frightening when you are first diagnosed, but we could all have something a lot worse! XXXXXXXXXXX

[beetle in reply to lizzziep]

Stem cell transplant is too high risk to offer to ET patients - not a good idea to put up with the pain on those grounds!

[Hidden in reply to beetle]

Think id be inclined to agree Beetle 😙

[lizzziep in reply to beetle]

Think I'll just Carry On Limping then!!

[Hidden in reply to lizzziep]

Aww did you say you wont go down the op route? its pretty awful when you suvffer knee pain i have and had a real job getting upstairs in my house physio helped but expect you have had all that

[lizzziep in reply to Hidden]

Yes I used to have a nice young man manipulating me, cost a lot though!! I've got an appointment at the end of the month to see if acupuncture will help with the pain relief.

I really don't want to have the op, especially with the risk of clots with the ET, and my local hospital doesn't have a good reputation so that doesn't help either.

I think eventually I will have to bite the bullet and have the operation but I'm going to put it off as long as possible. I go swimming 4 times a week to keep my knees mobile, and do a few exercises after every length, which helps.

Hey ho, got to put up with the pain for now. Still as I said before, things could be worse, so I should be grateful for small mercies. X

[Hidden in reply to lizzziep]

acupuncture helps me on my spine Are you in Uk? we get this on NHS and some physio about 6 weeks yes i get what you mean about blood clots do they give warfrin to ET patients. to thin blood, mind you it has to be stopped few day before any op of course so would Asprin i guess ! its good you swim i cant anyway would aggravate my neck pain, heat works well for my pains though x

[lizzziep in reply to Hidden]

Yes, I'm in South Yorkshire. I'm hoping the doctor will do the acupuncture on the nhs. I paid for the physio as it was a 5 month waiting list!! (Of course after the election all appointments will be within 5 minutes according to all the promises all the parties are making!!)

I'm scared of the op as I know 2 people who died of clots after knee ops!! Also a few others who say they wish they hadn't had it as they are still in pain.

Acupuncture worked for arthritis pain in one of our dogs, so maybe I should go to the vet!

I try to keep my joints warm, but today we are in our caravan in North Yorkshire, with the fire on as it is quite cold today - the sun went in as soon as we arrived. The forecast is good for the next few days (hopefully). X

[Hidden in reply to lizzziep]

Oh yes sorry i remember from your older posts your in Gods country ! yes wouldnt it be great if all politions kept to there word HaHa some hope , hope your treatment helps you soon yes vet idea well only problem being is there high prices but we have simalar health probs as animals so.... watch this space x

[Hidden in reply to lizzziep]

wish you a lot good days , yes thats what my daughter says ! alot people worse off 😒

[Hidden in reply to lizzziep]

yes im very scared i have to admit but its stillearly days for me so i know i will have to have the BMB x

[Hidden]

It was complicated. I went to my GP with a collection of symptoms - fatigue, reflux, migraines, visual migraines, night sweats, tingling that would go down one arm. She ran a whole lot of blood tests which saw me shipped off to haematology, rheumatology, neurology, gynaecology, gastroenterology.... I was diagnosed with ET because I had the Jak2 mutation but my platelets were not hugely over what they should be. The haematologist thought that my symptoms were more likely to be caused by some sort of autoimmune disease. Consequently to that I was diagnosed with an overlap of AI diseases. I take aspirin for the ET as a precaution. I try to exercise and TRY (not always successful!) to watch what I eat. The migraines stopped when I was put on treatment for Raynaud's.

[Hidden]

Hi yes mine was picked up in routine blood test my platelette count for me was always 200 and when it stayed to 475 for 4 month i was reffered but at first consultant more or less said i dont know why your here with that reading then she checked my previous readings it was high for me ,so been there ever since and now ther 506 in jan so march had jak2 test but she was convinced it was all due to my arthuritis which i have all in spine and elsewhere but i have had this for over 20 year! she said in march i have a mpd disorder so now my appoinment been bought forward by 6 weeks yes my Gp told me to take Asprin as a precaution too im glad i have a good gp she thought could be Pv but hospital say ET yes also alot symptoms simalar to alot of other health issues eh i suffer bad Anxiety and panics , I take it tahat all mpd mean blood cancer which scares alot people ... The word cancer wish you well and more good days than bad 😊

[beetle]

My only symptoms were severe, daily, activity-stopping headaches! I attributed the tiredness to having four young boys to raise!

[Borage]

Hello Catwoman,

There is a wide range of symptoms with ET, mine was diagnosed after a referral by a Rheumatologist for stiff and painful joints and raised platelets on FBC.

I suffered with frequent angina but no heart disease has been found. It is worse if I get dehydrated or stressed.

The fatigue limits what I can do, overdo one day and suffer for the next week!

I suffer with occasional silent migraines, frequent hot flushes, heartburn and some burning pain in my feet.

I had a horrible skin-crawling itching, with no rash, for the first couple of years but that went eventually.

Many people with ET also have Gout, high histamine levels, low thyroid levels and joint problems.

it is a fun illness!

Best wishes,

Borage

[Hidden in reply to Borage]

thank you Borage, yes its one way to put it haha im trying not to worry to much being as often with age comes more problems health wise i get the skin crawling too , i also have a mild mirtal valve regurgitation which showed on echo last sept but nothing to do with my ET i dont think but Artral frib and heart dissease is in family , but not so bad when we have ilnesses that are at least treatable , which helps me to feel grateful as could be worse , i wish you well 😀

[heathermc]

I am 51 and was diagnosed with ET, JAK negative and take asprin daily. I am going through the menopause, and try to lead an active life. ive sort of come to terms with what is going on but go to the hospital every 3 months. I exercise 3 or 4 times a week and try to go jogging every 2 or 3 days . I have a lot of knee pain, and suffer sciatica . Like yourself its all new to me so when I get aches and pains I keep hoping its age related. I work full time and do shifts, I have to be fit for my job being honest I get so tired and often have no energy.

I keep thinking I should take early retirement, as all this shift work and having to be fit for my job takes its toll. It is hard but Im not sure how this would work out medically. I m pleased I found this forum, least we are not alone.

[Borage in reply to heathermc]

Hello Heather,

I had to give up shift work and then retire early from the NHS.

ET caused me chronic fatigue, and frequent episodes of chest pain thought to be microvascular angina.

It caused joint stiffness and pain, especially in my fingers which made it difficult to grip things and I kept dropping heavy sets of patient records. It may have contributed to the scoliosis.

The hot flushes and itching skin were embarrassing, as was the effect of Hydroxy on the gut.

Silent migraines often made it hard to write legibly or read medicine labels. Missing meals and getting dehydrated frequently due to the pressure of work is not advisable with the increased risk of DVT!

I was also concerned about nursing patients with infectious diseases, knowing that my immunity was compromised. I caught a vile chest infection from a patient coughing in my face.

With help from Occupational Health and Human Resources and my Manager, I was retired on health grounds with some years added on to my NHS pension.

At least look into the possibility of early retirement. ET is a life limiting MPN.

Best wishes Borage

[Hidden in reply to Borage]

Hello Borage , interesting to read you get fatigue as mine as come on worse and didnt know that could be one symptom, i wake up like i havent slept and during day i almost feel doped up but its not due to meds 😞

[Hidden]

Hi Heathermc, yes this site is a big help , i must say you do very well ,what with working and doing excerises , im retired a long time now due to my sciatica and Athuritis also but i feel very fatigue and lethethagic during the day , im suffering with deppression and anxiety which doesnt help matters . im worryied what difference being jak2 pos and ET / Pv will know more next week at hospital ,im just so scared of it all and the word cancer 😥

[Phelpsy]

Hi I did have a problem when going abroad , I noticed my calfs were always very hard , & irritable legs ,!!!

never new it could of been my bloods , ((how lucky was I ))

[Hidden]

really , was that the first symptom you had then ? Phelpsy