Et: What's everyone's symptoms with ET - MPN Voice

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Hahag profile image
12 Replies

What's everyone's symptoms with ET

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Hahag
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12 Replies
ChrisAnnSen profile image
ChrisAnnSen

Very few. Mainly burning feet.

Wyebird profile image
Wyebird

Only major fatigue and loss of some hair and concentration. I’m a lucky one.

Deefen profile image
Deefen

Nothing - zilch - zip! Hope it stays that way 😏

swimswam profile image
swimswam

Wasn’t aware I had it until blood counts came back high, now on Interferon (Told NHS won’t fund Peg. For ET in my area ) and experiencing aching, and tiredness,

Meatloaf9 profile image
Meatloaf9

occasional tingling in palms of hands and occasional strange head aches.

SDJD profile image
SDJD

Hi, I went to my GP with frequent pins and needles in hands and feet, numbness in hands, some temporary visual disturbances and fatigue.

Less symptoms now on Hydroxy and Aspirin.

I have ET Jak2 diagnosed Sept 17.

Best Wishes, Suzy.

Devilgirl profile image
Devilgirl

Also didn't know I had any until diagnosed. Get temporary visual disturbances & headaches, loss of concentration, occasional tingling hands & feet with hands & feet always cold, Also aching bones. Not sure how many of these are down to the condition or unrelated.

fee13 profile image
fee13

Back of head felt like it was going to explode, migraines, double vision, pain in my neck, numbess down 1 side of face, dizzy spells, weakness & extreme fatigue. Get most symptoms only occassionally now (on interferon) but still have massive fatigue & sore muscles 24/7.

Cookiebaker profile image
Cookiebaker

My main symptoms were head felt strange not really headache but like my whole head was heavy and swollen and blurred vision that came and went....still feels that way after being on HU for 7 weeks. It is some better but not gone.

MJL1977 profile image
MJL1977

I ignored them all but I had vision issues, dizzy spells, fatigue, and worst of all occasional night sweats. The sweat had a strange odor and was not normal consistency. It all went away after a few months without any treatment. I’m only on aspirin now and fatigue is the only symptom, maybe.

Chaz1 profile image
Chaz1

Hubby has major fatigue, memory loss, lack of concentration, pins & needles in hands & feet, night sweats, hip & leg pain. He thought he had dementia which led him to go to the doctors & led to his diagnosis.

pard77 profile image
pard77

@devilgirl said : "Get temporary visual disturbances & headaches, loss of concentration, occasional tingling hands & feet with hands & feet always cold, Also aching bones. " Exactly my husband's symptoms.

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