Good day

I have been diagnosed with ET a year ago but ignored it and only started treatment a week ago. I am keen to establish whether one's diet plays any role?

Hello
My Mom has ET. SHe has been having a lot of pain in her right thigh to the point she could not walk. It is slowly getting better. They gave her a bone scan, and found a abnormality in the bone marrow there. We go to a blood Dr. In a few weeks. She is terrified. HAs anyone here had a scan and it showed a abnormality in the marrow? We are so new to ET. I'm trying to find anything I can on this to calm her down.

Thank you so much

Hi Jeera,

This is my first post, I am also interested in knowing whether “diet plays a role” with ET.
I was diagnosed 3 yrs. ago, and like you I ignored it at first. I started researching it about 1 yr. ago because my count started climbing in Nov '04 was 485, by Oct '07 865. I am not on meds because both of the Hemos I saw seem to think that I should wait till count is over 1,000 and/or I reach menopause, I am now 47. I am sure everyone’s case is different, I once read a post where a young girl in her late 20s was given meds with a count of just 450. I have tried vitamin E, (Jan-Apr 07) the count stayed the same. I continued to take it, but last blood test in Oct 07 count is up. The only difference is that during the first 4 months I was drinking hot water with lemon in the morning, I don’t know if that has any correlation but I went back to drinking it. If I find any “diets or supplements” that can help lower the platelet count I will let you know.

Thank you for the reply. I was taking lemon juice and hot water in the mornings at the time I was diagnosed. At that time my count was over 2000. I am on Hydrae and I am trying to eat as healthily as I can.

Regards
Jeera

Hi Jeera,
I was shocked to read that your count was up to 2000, while you were drinking the water and lemon. Were you drinking it because of the ET? Originally I was drinking it because I had problems with my stomach and I had read that it helps with the alkiline in your stomach. After my ET diagnose I thought it would help wash out the toxins.
I do hope your count will be down on your next test.

I had a chance to scan some of the other posts today but don't have much time to write since I am at work. I am happy for the lady who is expecting, and would like to send my Congratulations.
Tomorrow I am going to see another Hemo (my third) for his opinion since he is supposed to be a specialist in myeloproliferative disorders. I will certainly let you all know if he has anything to add. Until soon.

Hello everyone!
I just found this site.
My wife, 43, was diagnosed with ET 6 months ago. She had a bone marrow test which confirmed that. She also has a JAK2 mutation ( I don't know if it's positive or negative). She is getting PegIntron every 14 days.
I see that a lot of people went to the Mayo Clinic to see Dr. Tefferi. Can somebody tell me how to make an appointment to Dr. Tefferi directly? Or we have to see some other doctor before?
Thank you for your help.