Long overdue update on PV JAK-

[James1731]

Hi Everyone,

I haven't posted for a while as a lot has been going on but thought it would be a good time now.

I was diagnosed with PV JAK 2 - back in August 2016 and have been receiving regular vensections but haven't really noticed much of an improvement and I have recently had to stop working.A few months back my haematologist said that he did not feel my all my symptoms were down to this condition so asked my doctor to refer me for further checks.

My current symptoms are Chronic Fatigue,tingling in legs,muscle spasms,ear ringing to name just a few.

I have so far been referred to a sleep clinic( no issues)

Am attending a follow up appointment on Monday with an Endocrinologist, and have also been referred to a Neurologist.

My doctor said that as I had been suffering for 6 months now with the symptoms that there are a number of places I will now be referred to too ensure there is nothing else going on apart from PV.

I really feel something else is going on as my haematologist is so sure I should not be suffering like this with PV so wanted to share this in case anyone else thinks the above checks might help

Sorry for any typos

James

[mhos61]

Hello James,

So sorry to hear of your ongoing battle. You're obviously having a really tough time - reflected in your debilitating symptoms and the further impact this has had on your career.

The one good thing that has come out of all this is the endocrinologist and neurologist referrals, so at least that is a positive!

Has it been determined yet if you have primary or secondary PV? I know from your past posts there were issues around a diagnosis due to you falling into the 5% who are not positive for the Jak 2 mutation. I'm no medical expert - but surely it's vital to have an accurate diagnosis to determine how your PV should be treated. If it's 'primary' it might just be a case of medication alleviating the symptoms.

Are you taking aspirin? The reason I ask this, is one of the side effects is 'ringing in the ears.'

I hope things get 'sorted' for you soon James, so that you can regain some quality of life.

Keep us updated

Mary x

[James1731 in reply to mhos61]

Hi Mary,

My Haematologist said it doesn't make a difference if I have primary or secondary as the treatment is the same. He said I am too young to be put onto any other kind of treatment and that the he feels the symptoms are not related to PV.

I'm hoping these further test are going to highlight something else thats going on as well so that I might be able to get some symptom relief.

It's been a very frustrating time but my GP keeps reminding me this is a new disease and it may be something I will have to learn to live with but not until everything else has been ruled out which is really good.

My only concern is I can't take anything that helps with the Fatigue

[James1731 in reply to mhos61]

Oh and I am taking asprin but the ear ringing started months before I started taking them

[tifftriesit]

I would change hematologists. Those are the symptoms (except for the ringing of the ears. I don’t know about that one.), and your dr isn’t being very supportive. I’ve had PV JAK2+ for theee years now. I’m young too, 40, but treatments are still an option. Yes, still check out the symptoms with other doctors and tests, but your current hematologist can do more now.