Thought It would be good to give an update

[James1731]

Good morning everyone

I was recently diagnosed with PV JAK 2 Negative and have been suffering pretty bad wth the below Symptoms and so far have ony had one venusection.

Fatigue

,confusion,r

inging in ears/sensitive hearing,

twitching in arms and legs,f

eels like electricity is running through my body,

black lines/flies in eyesight,d

aily sickness which has stopped since my first Venesection,itching in arms and legs and areal issue concentrating which is effecting work.

I've been pestering my doctor and also my Haematologist but have not got anywhere and even spoke to a hospital in Oxford that have MPN specialists but was told I could not get referred to them unless my current Haematologist recommended this of which he doesn't.

I have been trying everything I can to get on top of at least some of my symptoms and last week paid a visit to a Macmillan Wellbeing Centre based at Southmead Hospital in Bristol and I finally think I am getting somewhere.

I was with them for around 2 hours and explained everything to them and they have refered me to a Fatigue specialist close to me,put me forward for reflexology and also explained that they were going to email the senior Haematologist at Southmead(who I've been told I should have seen first time round) who is going to review my case.

Yesterday I had a call to say I have an appointment next Tuesday and I am over the moon.

I keep reading post on here where people are able to live a pretty normal life which is what I need as I am finding I am sleeping way too much when I am of sick from work or at weekends so I am really hoping something else can be done for me when I go back to the hospital next week.

So a very quick question....Could you please let me know what I should be asking or taking a note off??I understand haemoglobin levels are important but is there anything else I need to ask about??

Sorry my first and only visit to the hospital was not very good and I was not given much information at all.

[Paul42]

Hi

Sorry you are having so many problems, there are a number of factors on your blood counts you should be looking at. Haemoglobin being just one, your Hematocrit level is another which measures the thickness of the blood, usually there is a correlation between Haemoglobin and this.

You could look out for thingsl ike your platelet count, or Ferritin (Iron) levels. A lot of PV patients have low ferritin levels, which isnt that easy to correct without making your PV worse but one to keep a note of as this will cause fatigue, dizzy spells etc.

What I would do is ask to see your blood counts, you are looking for arrows up or down against each one, any that show arrows just ask your consultant about and what it means.

Its all a lot to take in, i am 3 years down the line and still learning new things all the time.

Good luck and hope you feel better soon.

Paul

[James1731]

Thank you Paul.

I'll make sure I check all that you have listed above and might even try to grab a photo as I've heard other have done that to keep a record.

[Inca in reply to James1731]

I agree with all Paul has said.We all have the fatigue etc ,but you must get some control awful I think that you are left as you are.I am P V Jak 2 for 7 yrs now,take Hydrea and other Meds probably not given in U K. I am treated in France where medical care is second to none.I hope you soon have relief, I also had oncology massage which was great for aches and pains.Very best to you .k

[jane13]

I had same initial diagnosis to u and always, at every blood test, made a note of:

Platelets, white blood cells, Hb and HCT. Just ask the doc to tell you the measurement. I keep these in my diary in a table. You can look up normal ranges on the web. Also make note of when venesections, and Hu dose.

[johoho]

Hi James, it sounds as though you are finally on your way to making some real progress and thats great news. It may be that your blood counts are fine now, which is why youve had no further venesections. However it maybe that you do need more. Ask for a copy of your bloods everytime you are tested. The hospital email mine to me. They are all relevant but hematocrit / packed cell volume determine whether you need further venesections or not. A combination of your bloods , age and other factors would determine what, if any other drugs you would be given.

I would be asking for;

-a copy of blood counts,

-how often you can expect to need venesections & how will you know if you need one. My doc gives me a blood test bag to take to a hosp if i feel i need to be tested & my gp is happy to test me whenever i ask.

-get them to explain the levels of each count that they are hoping to get to and what is ok for you.

-I would also hope that they would give you some support over your symptoms though perhaps this forum is as good a place to start as any for that!

Good luck James and let us know how you get on.

Jo

[jeanr]

It is always helpful to get a copy of bloodwork results - not only to have for yourself to look up and understand, but if you get referred somewhere else you and they don't have a ooy of that information. I keep a file of my result and tests.

All good wishes.

[Moina-vdh]

Hi James,

Being diagnosed with PV is not an easy one to take in. Did they give you any information leaflets about it? I was given a leaflet/booklet which I found very helpful. If you can read about her ilness first, you have a better chance to think what the information means to you, and what more you'd need to know.

Have you got any medication for the illness? Most of us take at least baby aspirin to prevent blood clotting, which is the biggest risk with PV. Quite a few have other medication, too.

I would like to know what is the treatment and control plan to make sure your blood levels stay within a reasonable range.

All the best

Moina

[James1731]

Hi

Thanks to everyone for your responses.

I should have been a little more prepared for my first visit but thought everything would have been explained to me.

I have been taking Aspirin as advised on my first visit but not sure if I should be suffering as much as I have been.

I kind of accepted everything after I called the hospital and was told that if I didn't feel any benefit from the venesection they would not do another and that I was too young to look at the drug treatment route.

Mentally I am in such a good place and my employees have been outstanding but physically I am not so good and really do not think I will be able to hold my current job unless some of these symptoms are made a little easier.

If I'm suffering with fatigue,would you expect someone with PV to be hitting a fatigue wall most days by 12pm? and should I be twitching and tingling like I've had an electric shock most days with intense ringing in the ears?

Sorry if I'm being a pest guys but I was hoping the first visit to the Haematologist would have helped so I really don't want the second visit to go the same way......Unless this is just how it is with PV??

[Aime]

Hi James, so sorry to hear you are having a rough time and even worse with little support from your haematologist.

The other guys have given you good advice. I have PV too and also Jak2 negative and fatigue is my worst symptom. Lunchtime onwards would be a "hit the wall time for fatigue." I am not sure about the tingling etc but our PVs can have common and individual symptoms.

Always write down all your questions and insist on getting answers to them. I have become far more assertive nowadays!

It's early days yet for you to firstly get over the shock of the diagnosis and try to change your lifestyle to allow you to still do the things you want to/have to do. I work full time (although just had a partial knee replacement op so off at the moment). I managed to work a routine that if I go to bed about 8/8.30 at night, I manage to work the next day usually. I sometimes fall asleep when I come home from work but that's no big deal.

When I need a venesection I am more fatigued and have been allowed to work from home for at least some of the week. I just watch and do not plan long drives at work when I'm at my worse. If I have to drive for longer then I have stops as I need them

It does take a while to get yourself and your PV working in tandem but it will happen. My GP said if you need a sleep, you need a sleep and to stop seeing it as a failure! The way you are feeling is directly related to your thoughts. When I'm really down, I switch on the TV and watch a children's hospital programme and that makes me focus on how lucky I am.

Don't beat yourself up about being prepared for first visit, how can you be when its all new and scary. The rug has been taken from under your feet and your world turned upside down, it's okay to feel like you are doing.

Keep in touch with this forum, there are wonderful people on it who will become your friends and who understand exactly what you are going through!

Kindest regards

Aime xx😺😺

Ps Google mood gym.

[Litefootes]

I too have PV JAK2 neg, for 12 years now. Sometimes it STILL hits me like a freight train. My symptoms in the beginning were blackouts, confusion, itching, FATIGUE, vein vibration, constant headache. Also discovered at the same time I have diabetes & high blood pressure, so some of the discomforts could be from that. My hands felt swollen, hot and itchy. Once they did a bone marrow biopsy, I was diagnosed and started the phlebotomies. 2 a month for a year or so and I was feeling muchly improved. It was hard in the beginning, but after awhile I could see my own signs of needing the bloodletting, and learned how to function. Boss & coworkers didn't quite understand, neither did family so I was very frustrated for quite some time. I'm doing well now, tho I still have times when the fatigue hits hard, along w the vibrating veins. Seems my hematologist was doing the right thing in the beginning by keeping me anemic which 'convinces' the marrow to slow down on overproducing red blood cells. Drinking a lot of water, and walking honestly seems to help a lot. I sometimes still almost get the jittery nervous leg syndrom so I just get up and move a little, do some yoga to at least get my mind off of it. There IS life after PV. You will learn your own way to deal with it, and the challenges it brings. VERY important to find a doctor that you feel will listen to YOU, and help you learn your way.

Good luck with it all, and do keep up w the postings in here. SO many people are willing to share their trials, tribulations AND successes. Here in Arkansas, the phlebotomies are performed mixed in with those who are getting their 6 hour chemo sessions. I am almost always the only one in the room w hair and eyebrows. This has a huge impact on me. Perspective.

Carol