Hey everyone out there...
My name is Steve from Sydney (down under) Australia etc...
Thought it might be useful to have a chat and share some experiences here with the rest of the MPN community. I was diagnosed w/ ET only in the last 2 weeks (May 2016). They seemed to assume this finding rather quickly and I am still wondering if I might actually have Reactive Thrombosis (RT) as opposed to ET? There are apparently a great many similar symptoms, and after some rather exhausting (peer-reviewed academic research)... Well I am still wondering (& quietly hoping) that it is RT and not ET...
Bone Marrow Conclusion:
Mildly hypercellular marrow with trilineage hyperplasia which is marked in the megakaryocyte lineage.
There is associated megakaryocyte nuclear atypia and increased fibrosis suggestive of a myeloproliferative neoplasm.
Consistent with but not diagnostic of essential thrombocytosis.
Suggest BCR-ABL and clinical correlation to exclude reactive thrombocytosis.
(JAK2 & BCR ABL - negative) Not yet tested for CAL Reticulin.
My experience thus far emerged as an unexpected discovery. After 5 years of university studying (while also feigning at being my Octogenarian mother's default carer - she refuses any assistance of course :), during a routine medical for a o/s posting working in community aid), I was to learn of a 1700 Blood Platelet (BP) count, and that a suspicious episode I suffered last August, was a likely transient ischemic attack (TIA), and not a pinched nerve.
Naturally, at first... I just went into a passive state of sensory delayed shock. Probably only just resurfacing since that time now...
My BP, from May 6 (1700), May 20 (1515) and then May 27 (1384), hence, my BP levels stayed consistently high. However, they did drop significantly without assistance too...??? Hydroxyurea (HU) commenced May 27 2016.
June 17 will determine if the prescribed medications of low dose aspirin and HU has been a successful remedy in returning my BP levels to around 450 etc.
Of course, I do not wish to suffer a stroke either...
During these past two (2) weeks of HU medication I have noted the following:
Extreme fatigue, some bleeding of the gums on flossing and cleaning my teeth, some headaches, some heat flushing, some dizziness and vertigo, mild bouts of constipation and diarrhoea, and finally a rapid gain in weight which I have no doubt is now contributing to intense back pain (I am really having trouble walking about, trying to sit or even to lie down etc).
Hopefully, the final diagnosis might change to Reactive Thrombosis RT and I will be able to escape this poisonous treatment.
I am yet to ascertain what (if any) natural remedies might work for reducing BP production, if it does turn out that I do have ET after all...?
But very little to report as yet.
Retrospectively, I now realise that I have had a host of other symptoms like:
Seriously affected blurred & monocular vision loss that might last for seconds or minutes (I thought at that time I needed reading glasses so acquired them etc), erythema, which can be a superficial reddening of the skin,which causes irritation & dilatation of the blood capillaries and scarring to almost all of my finger nails and a couple of toes too, Infrequent - but serious throbbing burning pains mainly in my fingers that might last for longer periods of time, some loss of balance that has never really become what it once was (however, I am 57 years old)...
All of these MPDs are largely age related (in most instances), so much the crueler when it affects those in their youth. In age, it seems to correspond to degenerative causes.
In any event, I would be most happy to hear from anyone here concerning my post or even those just wishing to say hello of course...
Best wishes to all...