Anyone living with Essential Thrombocythemia with JAK2?

@sanlee7
I take 1000 each night after my evening meal. I don't wait till bedtime as I always drink a good bit of water with them.

sandym@arn.net
I am having increasing trouble with my feet. I have read that it is a problem with ET. I have been to two podiatrist and honestly, they address one problem but they don't seem to know much about Essential Thrombocythemia. I have had it for 11 1/2 years and am on 1000 mg of Hydroxyurea daily. I am about as well controlled as I am going to get at around 500,000 platelets.
I have had two hip replacements, L4-5 laminectomy with fusion, and a host of other problems. Is there anyone out there suffering from foot burning sensations, numbness, tingling, pain in the feet? Just curious. I cancelled my appointment with the orthopedic doctor when I realized that my problems is one of the symptoms of ET and few of the doctors I have been to know little about ET, except for my oncologist.
Thanks
EstrellitaMorris

Actually, it is Esperanza Morris. And, I do have itching issues also as well as dry flaky skin.

@esperanzam

I have been on hydroxyurea for about five years. My feet do tingle a lot and feel cold. I think ET is causing some of this feeling of neuropathy. it could be the hydroxyurea causing it. The doctors really do not know much about the symptoms of ET and what to do about them. at night, I put socks on my feet, and it seems to help the tingling feeling. good luck with your journey

@esperanzam

The blood of those without ET is a liquid. Our blood is more like a pudding.

Loaded down with extra and oversized platelets, it doesn't circulate freely.

This can mean headaches, and numbness and tingling in the extremities.

appraiser1946's excellent advice bears repeating:

"The doctors really do not know much about the symptoms of ET and what to do about them."

So we have to help one another figure this out.

@janemc
I totally agree. I made an appointment yesterday with an orthopedic doctor and was kinda upset because they said I would not see the "surgeon" but I would be seeing the doctors PA. I was hoping they would help me with some deviating toes, and pain. But I started remembering what my first hematologist in Venezuela that first diagnosed me asked me: Do your feet hurt? Of course my platelet count was 1.250,000. I said yes. So I started reading more again about the effects of ET,
I am going to cancel the foot doctor. I have already been to two podiatrist and still have problems.
I am glad we can share on this Support Group site. I welcome any ideas. I thought the swelling could be lymphatic but my Primary Care made me realize it is probably vascular and poor circulation, like you say.
Thanks for the reminder.

@appraiser1946
Thanks for responding. Yes, my feet are numb, they tingle, they hurt, all of it.
I had thought for awhile that is had more to do with the fact they told me that after me back surgery, I might not get total feeling back in my feet. I thought it was more from a pinched nerve, that they couldn't fix with my back surgery. I now think it is all from the ET. After 11 years, although my platelets are much better controlled, I know there is not the same blood flow as before. I am 76 (next week) so age has not helped. 🙂
Glad we can share our experiences here.

@esperanzam Hi, I had burning feet and hands and sometimes it felt like my blood was burning. I have ET and Jak2 mutation, taking HU and mini aspirin daily. I found once I started taking Hemp Oil daily I had no burning sensations, aches or pains. I checked with my doctor first before taking hemp oil. Good luck and I hope you find something that relieves your pain.

Yes I do and I recently had to change my hydrea from 1000 to 1500 daily to bring my platelet levels back down. Scary. I had a good freak out moment. But they are slowly coming back down.