Newly diagnosed with ET

[Lemon123]

Hi, I was diagnosed with ET 8 weeks ago, but when the Drs looked back at my blood tests, the platelets had been high since 2003. It's good to be here, and find out about ET from others who understand.

[mhos61]

Welcome Lemon123.

Glad that you have accessed our friendly, informative forum. It’s good to be connected with likewise people.

You’re not the first to have found that former blood tests (prior to diagnosis) indicating anomalies. Also, people have suggested suffering symptoms specific to MPNs for many years prior to diagnosis. I was diagnosed in 2016 with ET, but I had visual disturbances going back 15 years or more??

Having an MPN can be quite complex to understand especially in the early days of diagnosis. If there is anything you don’t understand ask questions here and someone will answer.

Mary x

[Lemon123 in reply to mhos61]

Thank you!

[JenngeetingR828]

That sounds similar to my story! My numbers were above normal for 3+ years before my Dr. ever mentioned it to me. My symptoms are what kept me asking my Dr. what could be going on.. I just thought I had a repetitive flu bug and crazy headaches and visual disturbances. So thankful for this site and all who share their experiences!!

[Lemon123 in reply to JenngeetingR828]

Thank you! It's a great support to meet people here 😊

[Sarahjane100]

Hello. I am in the process of being diagnosed with ET also. May I ask if you had a BMB to diagnose your ET? If you did, was it painful or bearable? Best wishes, sarahjane.

[Lemon123 in reply to Sarahjane100]

Hi Sarahjane, my diagnosis was found by blood tests only, so I'm sorry I can't help with your question. I'm sure someone here will be able to though. Best wishes

[stillkicking in reply to Sarahjane100]

Hi Sarahjane,

Not an easy time for you, and you have my sympathy and very best wishes as you go through this process.

I think it is fair to say from what I have read here, and from my own experience of having a BMB, is that people have quite a wide variety of experiences with it, ranging from nothing to worry about, to something they would never want a repeat again! We are all made differently (which is nice really!!), so it is impossible to really say how it will be for you.

It certainly helps if the person that does the BMB is experienced. Patients are sometimes - but not always - offered a sedative before the procedure, this will vary from hospital to hospital as to what is offered. Regardless of whether or not a sedative is offered, I think It is a good idea to ask for one. You will almost certainly be given a local anesthetic to numb the area where the procedure will take place, but... unfortunately, there isn't a way of getting that inside the bone, so there will be some pain when the sample is taken.

I had no sedative, and for me there were two times of relatively short duration (seconds rather than minutes) when it was quite uncomfortable, but no worse than what I have experienced at a dentist. I was pleased when it was over, but was not traumatized by it.

The area ached a bit for a few days afterward, but Panadol was sufficient to deal with that.

Kind thoughts,

Peter (ET Jak2-)

[redumbrella in reply to Sarahjane100]

Hi Sarahjane, I had a B.M.B on two occasions the first time was a few weeks after my diagnosis. It was performed on this occasion by the Doctor. I would describe it as very uncomfortable rather than painful. On the 2nd occasion it was performed by the Hamatology Nurse whom I had gotten to well over the previous 10 years or so, this time I was so relaxed I felt practically nothing and was surprised when she informed that it was all done. To answer your question in my experience it was a lot easier than I expected and you should not worty too much.

Wishing you all the best

Redumbrella

[socrates_8 in reply to Sarahjane100]

Hey Sarah-Jane & Lemon...

Welcome to the forum Lemon, I am certain that you will find everyone here most helpful with your questions. Great forum. Actually the best I have ever found thus far!

Sarah-Jane, I have just recently undergone my second BMB, and I can honestly say... I really didn't feel much of anything worth mentioning.

However, Peter is absolutely correct, if they offer you the gas-whistle – Take it. It really helps, as I did not feel anything...

Best wishes

Steve

(Sydney)

[Meatloaf9 in reply to Sarahjane100]

Hi, I am also ET. I did have a BMB. The Dr who did mine took his time and waited on the local to do its job. I did not have any pain and it was not uncomfortable. Hope yours goes as well. It won't be bad.

[Sarahjane100 in reply to Meatloaf9]

Thank you so much for reassuring me. I feel armed and ready to face my heamotoligist now on Thursday! Will let you know how it goes! Thank you again. X

[Lindy60 in reply to Sarahjane100]

My bmt didn't hurt at all they numbed it before and all i felt was a little pull.

[WileyFrench in reply to Sarahjane100]

Hi Sarahjane - I did have a BMB and it wasn’t bad at all. The best thing is to have the doctor do a “deep” freezing first. It all feels a bit uncomfortable but it’s really not painful, and took me less than half an hour. I walked home afterwards.

[Tico in reply to Sarahjane100]

Hi sarahjane,ad my bmb 10yrs ago now.woz warned it might hurt but can truthfully say i wud ave 1 dun rather than go 2 the dentist.didn't feel a thing,maybe i got lucky or just desperate 2 finally get a diagnosis after the nightmare i ad gone through.atb.x.

[Sarahjane100 in reply to Tico]

Thank you so much for your kind and reassuring words. I can honestly say that I feel so much better now, and will definitely go ahead with one now. To finally get a diagnosis after so much being fobbed off, even though it's so obviously ET to me. Everything else that it could be has been taken off the table. But still they say, it could be a number of things! Heamotoligist, here I come!

[Tico in reply to Tico]

Hi sarahjane, hope everything goes well 2day wiv haemo,keep us informed,by the way who first mentioned 2 u it cud be et? Again all the best 4 2day & u finally start getting sum answers.x

[Hidden in reply to Sarahjane100]

Hi Sarah

You won't feel any pain during your bone marrow biopsy. I hope is all goes well.

Kind regards

Anna

[Sarahjane100 in reply to Hidden]

Thank you Anna. I am going to go in with an open mind and remember to breathe and envision a sandy beach and blue sea, waves lapping on the shore and my husband and I, walking along, hand in hand! X

[JenngeetingR828 in reply to Sarahjane100]

Hi Sarahjane100, sorry for the delayed response. I did have a BMB, after I had tested positive for Jak2 . It was not comfortablei

Hi Will be praying for you’

[Sarahjane100]

Thank you so much for that Peter. I agree, it does seem to be about if theveryone person doing it is experienced! I so hope mine will be!!! Sarahjane.

[stillkicking]

Hi Lemon123,

Very pleased that you have found this forum, I am sure you will find it a great support. I still remember how lost I felt in the early weeks after my own ET diagnosis a year and a half or so ago, and the forum helped me enormously.

It does amaze me how often doctors seem to sit on blood results for years without seeming to take notice...( I also experienced that!). Very frustrating really, but good that something is being done for you now.

Best Wishes,

Peter (ET Jak2-)

[Lemon123 in reply to stillkicking]

Hi Peter, thank you. I'm Jak 2 too; it's really good to find this forum and hear from others who are in the same situation.

[ansaseeker]

Hi Lemon 123,welcome I am very newly diagnosed with Polycythaemia vera, just a week now,I had high platelets back in April when chest pains had me in hospital for the day, the hospital said I was dehydrated, and this can raise platelets my G.P. afterwards picked up on the high platelets and ordered weekly bloods, along with starting on aspirin which had me very anxious. I waited about 9 weeks for an appt with the haematologist, and after bloods and an ultrasound was diagnosed last week. Im still coming to terms with things, and so glad I found the group, they have been super supportive in the last few days, and I feel cared about, and you will to. Look forward to speaking on the group. In Good Health. Best Wishes Marilyn x

[Lemon123 in reply to ansaseeker]

Thank you Marilyn, I'm Jak 2 too. Just aspirin atm, back to see the haematologist in about 9 weeks.

[Mycancerconcern1]

Hi Lemon123. I was diagnosed with ET JAK2 positive around the same time as you and i am on Hydroxycarbamide & Clopidogrel. I have also had a high platlet count since 2008 unknown to me. When i asked the Hematologist last week when i was at hospital why i had not been tested for ET long before now he could not give me an answer. I was at my GP yesterday explaining that i was absolutely drained with all the symptoms from ET. I know its not the medication as i felt like this in 2008 when i first visited the GP only that it has gradually got worse and they diagnosed me with High Blood Pressure. I still had all the symptoms after several changes of medication to control the blood pressure. I had cramping in the hands arms and legs so i was tested and injected in the wrists for carpel tunnel syndrome which never made any difference. The GP then sent me for electric shock treatment were they said they could find nothing wrong with me. When i talked to the GP yesterday the GP said we will take some blood tests to find out what can be making you weak and tired. I told the GP i have had blood test done several times over the last 2 month and it is the illness i have that is making me tired which tells me i have had this since i first came to the surgery in 2008 complaining of all the symptoms i still have. The GP then asked if i had any bleeding from the back passage or in my urine which i answered no to but still checked my back passage anyway for signs of blood which was ok. Her conclusion was to put another appointment on for some more blood tests then put another appointment on to see her again after i get the blood tests. The nearest appointment i could get for a blood test was in 10 days and it will take a further 10 to get an appointment to see the GP again. To me this has been a waste of time being seen by a GP who has no idea whatsoever about our illness and treats you for something else when it is obvious what the problem is. I would advise you that if you ever have to give your GP details out to claim for any benefits give your Hematologist's details not the GP's or you could find you will get nowhere.

[Lemon123 in reply to Mycancerconcern1]

Wow! You've had a tough time! Thanks for the heads up 're using my Haematologist rather than GP if I need to claim benefits at any time in the future. Other than the GPs not noticing or realising my high platelets needed investigating - first raised in 2003 and continually since then - until a Dr queried them recently, I've received excellent care from the hospital now looking after me. The diagnosis has explained a lot, my low immune system, fatigue and tingly toes. I'm taking aspirin atm and see my Consultant again , 3rd visit since diagnosis 8 weeks ago, in about 9 weeks time. I'm Jak 2 positive too. I hope you're okay, I'm very grateful for everyone's welcome to MPN Voice.

[Mazcd Partner MPNVoice]

Hi Lemon, welcome to our forum, as you can see, you get lots of useful advice from the lovely people on here. Have a look at our website mpnvoice.org.uk for some more very useful information that will help you. Best wishes, Maz

[Timjonze]

Good to have you onboard Lemon123! My haematologist says she believes my MPN has been around for about eight years. Definitely had blood tests in that time - always wonder what they revealed. In fact when I had blood tests last year I was initially told they were normal over the phone. It was a chance revisit to the GP for something else that led me to find out about platelets being slightly raised and I had to push for further investigation. Frustrating but perhaps better to be in the dark if your health is fine and you’re being looked after now!

[Lemon123 in reply to Timjonze]

Hi, very true. As I said to my family, at least I've not been worrying for the last 15 years and now I've found out, I can look after myself and get the help I need to stay as fit as possible. Best wishes to you.