Hello from Syracuse, NY!!

[Skidsteer565]

Hello everyone. I am new here and newly diagnosed with ET. Using forums of this type to learn about MPN's. Will likely spend my time lurking to learn. Nice meeting you!😀

[Cat1001954]

hi and welcome to the family😊

[Spanelmad]

No problem with lurking or asking "silly"questions! As I've been finding in the last 6 months.

[brightlys]

Hello! Welcome to the MPN club!

[C_Anne_Orange]

Welcome aboard! Lurking is good and how we learn.

[Threestreams]

Hi .. great forum to belong to .. I too diagnosed at 67 and was like .. what is that ? Why and how ? Appears probably had it for some time and will explain some of the symptoms I was struggling with .. tired brain fog etc .. I was firstly diagnosed with haemacromotosis that then lead to the ET as well .. having to look after my health now ….

[RedCardRob in reply to Threestreams]

Yes, great forum. Same here, 69 and have probably been with ET for at least 7/8 years maybe more. It was only when my GP was "curious" following a yearly chest check up that he followed up with a series of blood tests. I had all the symptoms but not all at the same time(until late last year), he looked at it historically collectively.

[Threestreams in reply to RedCardRob]

Do you get the brain fog .. or that is how I explain it .. just a bit slow to think about things at times .. or remember things .. was getting bit worried re dementia .. see that others comment on it .. how about you ??

[RedCardRob in reply to Threestreams]

Yes I do, I have wondered why I've struggled occasionally to remember things that I have previously recollected at the flick of switch.However, I have not nessarily put it down to age and being tired....or ET.

There may be a 'retirement' factor, namely that work thoughts are no longer needed which are regular/repetitious/methodical, etc. Retirement brings in new thought patterns where we somehow have to reorganise our day...so confusion creeps in when we can easily change our activities and subsequently change our brain patterns. So that is where the fog appears ..the knowledge is there but we need to travel the 'A' road pattern instead of the motorway route!This may be different for people that worked with knowledge...teachers, etc.

I am a retired civil engineer and had to recall standards, regulations and hold in all the construction knowledge. So not having to was a relief for my brain!

So maybe we should keep active mentally and physically.

Sorry for the waffle but there is no easy answer.

[RedCardRob]

Welcome to the forum. Likewise, I am 5 weeks into treatment (interferon) and found more information reading posts, whether you are technically minded or just need encouragement/help on generally getting along.

The main thing in the beginning is sussing out the right questions to ask the consultant and dedicated care nurse (you can call them anytime 24/7) because I was dazed with news and all the acknowledgement of ET and things they said at the initial consultation. I mean, when they ask you "have you any questions"... I'm thinking "what the!"

Lurk on!

[Threelions]

Hi

Lovely to meet you & a huge welcome. I’m ETJ2+ & have gained so much support & information from my great friends here.

[KLCTJC]

hello and welcome!! This is the ONLY social media I do. This place is great!

[PhysAssist in reply to KLCTJC]

Same!

👍

[hunter5582]

Hello and welcome. This is an excellent place to learn about MPNs from a patient perspective. There will also be references to good sources of information that others come across.

This is an example of a great resource. MPN Molecular Biology is a good place to start mpninfo.org/conferences/202... .

Wishing you all the best on this journey.

[PhysAssist in reply to hunter5582]

Thanks for the link- lots of information I hadn't looked at previously.

PA

[AndyKay]

Welcome. This is a great place to ask questions and to get answers.

[Katone]

Welcome, I also spend time lurking to learn!