Greetings from Devon

[Kimhock]

Greetings and Salutations,

My name is Kim and I currently live in Devon.

I was born in Yorkshire many moons ago and spent the majority of my life in Cape Town, South Africa. My husband who was born on the Isle of Wight, myself and our two adult sons returned home to England in January this year. The boys live in London, we tried it for 6 months and happily moved to the country in August. We absolutely love it here. After years of living in an increasingly unsafe and uncertain environment in SA, it is an absolute pleasure to be back home

I'm not sure at this point what if any MPN I have, currently going through the process of elimination process after finding my platelets were high (all other bloodwork is fine) and on the increase during a routine blood test when I signed up at the new practice in my hometown here in Devon.

I saw the hematologist yesterday, they have found me to be JAK2 and CALR negative. They are no running additional tests on blood work taken yesterday - not sure what they are testing for this time, but based on those results if nothing shows up there I will have to have a bone marrow test Really not looking forward to that!

Medically I have had a crazy three years, so on one hand I'm hoping they find something to explain all the symptoms and on the other hand I am just hoping I can write it all off to perimenopause.... in a perfect world I guess.

I look forward to being part of this community

[Kari1961]

Hi Kim

Welcome to the group! I'm also from Devon... Exeter. I hope they get to the root of your health issues soon, without the need for bmb.

I have PV Jak2 + and the staff and treatment I receive at the RD&E are/is fantastic.

Wishing you well and that you get answers soon.

Karina.

[Mazcd Partner MPNVoice]

Hello Kim, welcome to our forum, I hope you get a firm diagnosis soon, let us know how you get on. Best wishes, Maz

[Helpatlast]

Hi Kim welcome you will get plenty of support and information here once you know whats what. I was like you ten years ago mega high platelets picked up in routine bloods for something else and fortunately a very good GP sent me to a haemo- oncologist for diagnosis didnt take too long but I did have a bone marrow test to do so - dont worry that test is ok its soon over and does help give indication whata happening in your bone marrow. I was found to have ET Jak neg and started on HU which i am still on. So you will gat there and get good help to treat you - keep us posted. Jill

[Kimhock]

Thanks for the very warm welcome

Helpatlast - I somehow suspect that ET Jak2 (-) will be my diagnosis as well. How do you find the side effects of the medication? I generally don't handle meds well and usually develop every single known side effect plus a few more no one has heard of as well

Medically I have so much going on, I am dreading another chronic illness.

Currently I am suffering from:

Rising Platelets (they go up with each blood test taken, currently at 754)

Controlled Hypertension (on a low dose diuretic / bp is generally within the normal range now)

Left Knee osteoathritis

Cervical Spondylosis

Strange swelling on left arm and lower left leg (no one can tell me what it is) - have had blood tests and doctors have checked and confirmed its not blood clots thank goodness

Tinnitus

Perimenopause (have to wonder if a lot of the odd symptoms aren't from that!)

Suffered severe anxiety for nearly 3 years - has calmed down to a mild panic now though

Plus a few more minor ailments

Strangely enough all of this started up two months after I quit smoking... go figure

Ah well, I for once will leave it with the doctors and hope they are able to find a reason for all of this so that I can start working on managing the symptoms

[Mardigras in reply to Kimhock]

Hello, I am a recently diagnosed ET sufferer. I am reading as much as I can about MPNs to better understand this disease.

I do hope that the doctors can find out quickly what is causing your high platelet count and you can get some help with that.

I was interested to read that you have a strange swelling on your left arm. So do I.

I asked the doctor about it more that two years ago and long before the ET was diagnosed. He just looked at it and said it's not cancerous. Just a limpoma. You can get it operated on but it would have to be privately.

My bones in my ankles also hurt when I walk and have been swollen for years too. The docs. don't seem bothered by that either. Just oedema they say.

I am on hydroxy, simvastatin, aspirin, lisinopril and omeprezol. I have to say that I feel a lot worse on the medication than I did before, but the platelets have come down.

I would love to stop taking such a cocktail of drugs and am going to ask if I can reduce some of them. Maybe I wouldn't feel so tired then.

I hope you get lots of help and information on your condition and will be feeling better soon.

Kind regards,

Marcia

[Helpatlast in reply to Kimhock]

Yes I think it sounds like ET for you but your consultant with get a diagnosis in due course. I have been on HU for ten years and initially yes I did have side effects as my body adjusted and I was on a very high dose as my platelets were very high but in time your body adjusts and you also get to know the things that help one huge thing being lots and lots of water - which you will hear people on here say a lot. Don't over worry about meds as in essence they are our friends even with their odd side effects because they are treating the problem and keeping us safe - which is far preferable to potential problems that would come from an intreated MPN along the line. When you get a firm diagnosis and treatment plan we can all help out with whatever you are advised to do. By the way tinnitus can come from MPN I have had it since I have had ET. And yes the symptoms of Perimenopause can get confused with some MPN problems although I can now distinguish a hormoneal hot flush and the overheating of ET and other things!! Don't worry you will adjust and find a managable way of living with a MPN. All the best.

[lizzziep]

Hello (or hey up) from one Yorkshire lass to another, I have ET, jak2 neg. I was on Hydroxycarbamide for over 3 years and was recently changed to Anagrelide because of side effects. My high platelets were picked up via a random blood test. Hope you can get a proper diagnosis.

Best wishes

Lizzie

[Malaika]

Good morning from another Devonite and welcome to this most caring forum. I too am a northern lass relocated 18 years ago and love it down here. I have ET and am JAK negative I was diagnosed in 2001. It has been a bumpy ride but the folks on here are fantastic. I hope you get answers to your questions good luck with everything.

Malaika

[Kimhock]

Some feedback -

After loads of additional blood tests, I finally received a letter from the hematologist on friday stating that ALL blood tests were negative. They have booked me in for a bone marrow biopsy on the 6th December.

I'm seriously at the point where I just want to know what is wrong with me so that we can start the correct treatment. I am really concerned that they are not going to find anything wrong after the BMB as well... in which case I really don't know where we go after that.

I have now developed a pulsing, throbbing sensation between my nose and right cheekbone - every year around this time a new symptom pops up, none of them have left yet - its almost like I'm collecting new ones all the time Life is starting to get me down now and all this is really affecting my quality of life and I am seriously getting to wits end. I've always been strong, a fighter and have faced many challenges in my life - this one is proving to be the worst to date and I hate to admit it, but I am really scared its going to beat me into submission!

Rant over

I'll post again once I receive the BMB results.

Thanks to everyone for their continued postings - a community like this is so very important to us all.

Kim