I have enjoyed a very restful day! Slept in most of the day and we are

now watching tellie! A very non-productive day! i am in the process now

of trying to send on a cute joke on comp. The day was lovely here and i

slept it away. Shame on me. But I do enjoy it when sleep just comes and

i go with it as there are so many times that I can't sleep at all! I'll

probably be up late tonight--i do need to get out tomorrow and do a few

things and quit being so worthless! How much longer do you have at work

tonight and has it been quiet tonight?

Welcome Ylas!  Let me introduce myself, my name is Colleen, 31 years young!)  Mother of 4 dx with myelofibrosis March '09 (family  of PV & ET).  I am on a novel of meds from hydrea to iron supplements.  Doc is happy with my plt at 214.  I am glad that you found us.  It is no fun to go through this disorder alone. 

Pauline sorry that you had a rotten day yesterday hope that it will be better today and that all will go well with your house.  We will need somewhere to stay when we come to see you!  LOL HAHAHA 

Pauli  I am that you are enjoying your time in the sun.  I have to say that I can't wait to be a snow bird!  Anything will be better then freezing my butt off in Minnesota.  Uf-ta!) 

Mimi I love days that I have nothing to do but chill.  I don't get them much, so when they come I eat them up!  Bad news from our house.  I think that my oldest son now has H1N1.  He had a temp of 101 last night, so he gets out of school for at least day.  We will see how thing go.

Well I pray that everyone has a good night and better tomorrow!)Colleen

Thanks everyone for the kind welcome. My name is Sally; I am 57 and live in the southwest U.S. I am sad that some of you are so young--twenties and thirties!

In answer to a couple of questions, all I take as yet for the ET is 81 mg. aspirin daily.  Interestingly, in light of what one of you said about migraines (I have not sorted everyone out yet!), the ET diagnosis came just before a Meniere's diagnosis. For the previous year, I had experienced a dramatic return of frequent (weekly) but much milder migraine headaches (earlier in life I had absolute killer migraines, but only about once every year or so), and then experienced several dramatic episodes of violent vertigo lasting up to eleven hours. I was willing to do or take anything to make that stop. When the test came back positive for the JAK-2 mutation, I was ready to start the Hydrea as symptoms for ET seemed to correspond with what I had been experiencing.  But my hematologist wanted to hold off on the Hydrea and said he thought something else was going on as well. He sent me to an otologist, where I had a battery of tests that confirmed classic Meniere's. Once I started treatment for Meniere's (niacin, diazepam, Lipo-flavinoid vitamin/minerals, and, at night, one Benadryl), the migraines stopped. Yay!  I still think two diagnoses at once is odd, but I was finally convinced.  And the phlebotomies really help with the high hematocrits and white counts since the PV-type stuff has been going on.

When I had a phlebotomy last week, the nurse said helpful things like,"Wow, your blood is like sludge," and "Wow, your counts are high, aren't they?" She actually was sweet and I didn't mind. But then she said, "Have your kids been checked for PV?" and my already-thick blood froze. Are my kids at risk?? I haven't seen my doctor since then to ask him.

Everyone please have a good day!

Sally

Sally, That was indeed not only my 1st asked question, but I have asked it time and again for assurance with every doctor I speak with regarding the ET.  The answer I have always received is NO it is not hereditary and my children do not run a risk of getting it.  No one know for sure why we get this at this time, but it does not seem to run in familys or have a common cause.

Linda

Dee, it sounds like they were very thorough in the testing today and that's a good thing. I can well imagine that you are pooped from the day, but I'm glad it's behind you and I'm hoping it leads to more discovery that will put you on the path to proper treatment. al in good time--only wish it had come sooner. Good luck and sweet dreams--go to Sleepy Town and get some good rest. Pegetha hope things are going well for you--I miss hearing from you. Sally, hope you enjoy our cozy little group here--we are all here for support and care very much abt everybody, and anything goes here--laugh, cry, vent, talk abt your fam and kids --anything. You're only a "newbie" upon your first post--after that, you are one of us and we welcome you with open arms. Pauline, hope your night shifts are going well. BUT most of all I'm praying that the house deal goes as planned. sending positive energy fields your way for the house deal. Emily, things must be going well for you--loved the pics! and have a feeling that y'all enjoyed a wicked Halloween! Linda and colleen, hope y'all are faring well--I can't recall the posts and will have to go back to them to see what's going on.  Collen, I enjoyed the pics and thanks for sharing them. We just caught a huge RAT in the laundry room--freaked me out...but we set traps and caught him within 10 mins. He has eaten through a washer hose so now it's damage control! I went to do some laundry and came nose to nose with him while bending over to reach the detergent on the floor! Freaked me out! Everybody have a good evening and will chat with all later. And PS: my back is doing much better -just had a little set-back--all better now--it's just a part of my life....love to all

Dee, it does sound like they did some thorough examinations today!  That is great.  We'll be waiting to hear your results, too.  The Lord has blessed you with so much patience and endurance!  You are such a blessing to all of us!  Looking for some real answers for you that will really help!

Hi to all, you are all in my thoughts and prayers while I bask in the sunshine!! lol!! 

love Pauli