Symptoms of ET

[mickey64]

Can anyone tell me what there symptoms were before bringing there platelets down with meds. These are mine, not sure if they are related to ET, Anxiety or stress. Tiny bruise marks comes and go on top of hands. Sometime when arm hits against something feels like a burning sensation. Lots of headaches but I have horrific sinuses (had a hole in my sinuses once and since then always bothered me). blury left eye sometimes with a grayish film over words comes and goes. But the weirdest is a trembling inside kinda feel like I'm plugged into a light socket. Anybody have any other symptoms or any others that they have been told are associated with ET. Thanks for any input! Mickey

Sometime I just think I'm a mess! :(....sorry I have all these questions hope I am annoying anyone and if I am please tell me.

[mickey64]

LOL I meant hope I'm NOT annoying anyone, sometimes I should proofread before I hit send!

[sjdard]

I have ET and I am jak2 positive. I have most of the symptoms you explained there, the only one that I don't is the tiny bruising on hand but I do get bruising elsewhere that is unexplained. Other symptoms I get are either freezing cold or burning hot hands and feet, headaches/migraines and a pins and needles feeling around the area where my spleen is. Any of these symptoms can happen on a daily basis but the one that get me the most every day is the instant fatigue. I get no warning And there nothing I can do. I just have to try and get through it. I get no answers from my gp who just say I been through a lot and its my body adjusting or my heomatologist who say just keep taking the medication. sorry I can't advise on how to relive these symptom if I new I would be doing it and telling everybody about them, Your not alone and there are always people out there to talk to. Hope this is a little help and take each day as it come.

[Mwalimu in reply to sjdard]

I was diagnosed with ET, JAK positive in 2011 and take HU and asprin with few, if any, side effects. Before starting medication, I had pains/aches in my right jaw so had everything x-rayed by the dentist only to find later this is a well-known symptom of ET. I also had pains in my finger tips which have reduced since starting medication but are still there from time to time. I was very tired before the diagnosis and get fatigue quite suddenly now. (Am told I turn white!) I either sleep for a short while or walk it off.)

I seemed to pick up colds and had chest problems which lasted for ages but that too has largely disappeared since medication. Over-all life is much better and, although very worried about taking HU at first, I now think of it as a life-line.

Hope this helps in some small way, and that you find HU as positive experience as I have.

[mickey64]

I have not started it yet, but will start this week coming up. I'm going to try it, I'm really going to try to keep hydrated that is a big problem with me as I like coffee! My skin well its so dry always has been and even my hair is dry, I could go (I wouldn't though LOL) for a month without washing my hair and I would not have a speck of oil! You know I always thought that the good olde USA was much more advanced in medicine then the UK but I have now changed my mind on that. The UK seems to be much more advanced on the MPN's and years ago my father had prostrate cancer and they gave him this experimental medicine that had only been used in the UK, guess they thought he was old and on his way out, but guess what it worked, it not only worked but he was in total remission! Then years after he passed I found out it was the drug of choice in the UK and then the good olde USA starting using it more often.

[mickey64]

Katie, FYI you did not answer my last question any relationship to a Pat Walsh? she would be around my age 63/64. Just curious she moved to Florida many years ago.

[katiewalsh in reply to mickey64]

Hi Mickey. Sorry. I thought I told you that I have a cousin Pat but she lives somewhere (?) on the west coast of US and I don't know if her last name is Walsh.

About your symptoms. A few years ago I experienced something like you describe (so well) of being plugged into a light socket. They think it was a mild TIA. There were no objective findings on MRI but that can happen if it's a slight TIA. Hang in there. Try not to think too much about this stuff. You sound like you're pretty strong. Katie.

[mickey64 in reply to katiewalsh]

Gee I sure hope not, I have had this before years ago before I was even diagnosed with this ET. its more like a shaking inside, I tried to explain this years ago to my cardiologist and he look at me like I was crazy. I sure hope its nothing to do with a TIA.

[katiewalsh in reply to mickey64]

PS. My cousin is around 68.

[mickey64 in reply to katiewalsh]

next time you hear from your cousin ask her if she ever lived in Maryland. I remember she had a brother and her mother worked for the telephone company I think?

[rmorritt]

I have had exactly what you are talking about My platelets were at 1300 and now at 540 not all symptoms are gone I still have the blury vision I really hate that one and the burning sensation the most

Its very disappointing when I ask the Dr's about it they don't have a clue

Luckily for this site I have found that I am not alone with my symptoms

[mickey64 in reply to rmorritt]

I know what you mean, I ask Dr and he just looks at me??. all summer long I kept complaining to the eye Dr that my glasses and prescription were off, HUH and he kept saying there is nothing wrong. I always had tingling in my hands and even my lips, I remember having it years ago but I looked and my platelets were in the 300's. I did not get this until they took a part of me (a lobe) out of my lung, right after the surgery my platelets were normal, but then slowly I am guessing they started climbing, I had tons of xrays, CT scans, pet scans all with contrast and radioactive stuff. I probably over the past three years have had 20 or so xrays and ct scans. Now this really makes me think when my reg gp says he runs when they ask for xrays and my surgeon too many are not good? makes you wonder if all that radiation, they say its low dose and they say I have to have it which I agree with because my cancer was caught very early just on a screening. I also wonder if major surgery contributes to it. I had two, first one was 2 1/2 hours and that caused tons of inflammation (they looked around and took out and tested tons of lymph nodes). The second was six hours, I know this sounds weird but that all was a piece of cake compared to this diag. Maybe because I knew I was going to be cured?. And even if I would have had to have Chemo it would have not lasted! Then I started really eating good and now this makes you wonder for sure. Thanks Mickey

[lizzziep in reply to mickey64]

I have ET and often get tingling in my lips. I sometimes get a feeling that is hard to describe, a bit like when you have low blood sugar, not quite faint, but a little hot and trembly inside. It soon passes though. I wasn't sure whether that was the ET or just me! I mentioned it to the doctor - again he just looked at me!!! I wonder if they train them with those "looks" at med school??

[mickey64]

But in any event rare, chemo drug, not knowing what the future holds, not knowing too much about these MPN's which makes you think the research will not be too extensive and then there is the fear of developing into something else, when I had cancer it was earth shattering and you never get the thought out of your mind on every little ache and pain is it back? then you get hit with another whammie...I try not to stay in that place too long and everyone on here has been sooo kind and understanding and I want to Thank you for that and promise I will not complain too much. :). mickey

[rmorritt]

I was so scared in the beginning too running to the hospital blah blah but it does subside right now they are giving me 1500 (3) hydrea a day but hoping that my fatigue and some symptoms with go away

You will be fine there is another group I found helpful on facebook

if you cant find it here is my email address I will reply with a link

[e-mail]

thanks

[mickey64]

I also have cramps in my leg, have had them for years and years, all kinds of test done nothing.