Hey Linda...
No, I cannot say that I am aware of your doctor at this stage. Which oncology/haematology department is he attached to?
I Googled him and he seems to be at Wahroonga and Westmead. I am based in the Hills and my doctor also treats at Westmead.
Having said that, however, very few doctors in Australia, are actually MPN Specialists, with a few exceptions...
Hopefully, our Fundraiser and Awareness campaign might eventually help change some of that... one hopes...
When I had my last TIA, the very first thing I noticed was the Tinitus slowing building in my ear (Left). It gradually increased and rose to a crescendo then there was like a slap/shock... At that juncture, I lost the use of my right arm, my vision became monocular with little white lights in my periphery, and my speech became slurred... I recall feeling like I was trapped inside my body, like it was some kind of vehicle... It was a strange sensation, an out-of-body experience I guess you could say...
That is why I have mentioned Tinitus to you, irrespective of what others might have to say... I am now able to be aware of my platelets on the rise, via the presence of my Tinitus... which tends to be present whenever they are elevated etc.
Hence, all I am really saying is that it is worth keeping an eye on them, from time to time... Please do not become overly anxious about it Linda, because your platelets are well below where mine were at the time of my TIAs etc...
Yes, I also understand that this diagnosis can be overwhelming for all of us in the first instance... However, usually once we know a little more about our own individual MPN, and come to understand how the treatment, (medical regime), we are having is helping to manage our out-of-control blood cells... We eventually can realise an almost normal existence again... almost...
(Fatigue is unfortunately a terrible constant for most of us...)
For ALL of us that is more or less true... All of us have a slightly different MPN, and at the same time, our symptoms are very often very similar too... So usually a FORUM like this one can become quite a useful tool...
Personally, I do find it quite a comfort to realise that other people know and understand what I am going through...
Linda, Garry and I usually arrange a cafe catch-up every so often... Generally around Parramatta just because it seems reasonably central for most... Some times only Garry and I turn up but it matters not...
Linda, if you come along to the next one I can try to explain to you a little about what our blood results generally tend to indicate...
I will simply print off my last Full Blood Count, (FBC), and run through each of the indices with you etc.
However, no single blood test should ever be considered in isolation, but rather seen as a trending event. Presently, my FBC I arrange every 6 weeks. I collect all my test results just so I have an idea of what is going on... For me? I found that comforting. Others prefer just for the medical teams to advise them etc... We are all different, and what one person wants or needs varies of course... In the end, all that matters is what works best for you...
As to some of the medical MPN jargon that is used, I have also tried to list some more common terms on our Glossary page, that might help you a little:
https://www.mpn-mate.com/mpn-glossary/
Anyways, should you want to do the cafe catch-up sometime just let me know, and I will private message (PM) you my contact details or send you an email, whichever you prefer...
Stay happy & well Linda...
Steven
until second opinion. 
at work in my life than the last year that passed. It was building up that I wasn’t able to slow down. Wake up call I suppose. 
