Symptoms and disease duration

[Davide1984]

Hi everyone!

I got a question for all of you: there is a correlation between symptoms and disease duration? They appear with the duration of the disease or they are present at the onset of the diagnosis? I know about people in Italy diagnosed with ET who experienced headaches, fatigue, bruising at the onset...and others patients with MF who diagnosed 5/10 years who live without signs of progression.

So, what is your experience? 

[mol56]

Difficult to say.

 I have E.T. jak neg, Calr positive. When I was diagnosed 11 years ago, I was already experiencing headaches but I had a history of migraines going back many years. I am 65. 

The headaches were worse during the menopause but are a lot better now. As I hadn't had a blood test for many years before diagnosis, who knows how long I may have had E.T.

 The extreme fatigue was the reason that I went to the G.P. and my diagnosis was quickly found after blood tests, BMB and a scan of my spleen. 

[Davide1984 in reply to mol56]

thank u mol56

[Hidden in reply to mol56]

I am same as you Mol56 interesting you mentioned migraine. I have had them as long as I can remember. Nothing to do with ET I reckon?? I question fatique, as I am a shift worker I have always felt very tired and exhausted after working the morning shift. I would really like to know what is the difference between my generalized tiredness and fatique? I have been working shift work for 48 years!  Possibly the cause of my migraine? 

[AndyT]

I think I am lucky - 13 years since diagnosis with ET, CALR+ and still no symptoms that I can attribute to ET. Yes I get headaches and tiredness but I'm sure they are more to do with a busy job and getting older than anything else..! 😀

[Davide1984 in reply to AndyT]

Thank you Andy! We do know about the efficacy of Pegasys and we are waiting for it in Italy too. Probably, it could slow progression and some patients obtain great results in their blood count and bone marrow too

[Hidden in reply to AndyT]

Ditto! I was diagnosed almost 1 year ago. Very happy to see Andy you a well and nothing has change! ☺

[HelenK]

I went to see my GP in November 2012 after months of feeling exhausted, daily headaches and waking up with numb hands. Diagnosed ET, Jak 2 negative, CALR positive. I had my first migraine 2 months after diagnosis, watching a film and the screen suddenly appeared as if it had been struck with a hammer. Regular migraines with aura now unfortunately.