JUST DIAGNOSED-ET

[MPN123]

Just diagnosed, bone marrow biopsy tomorrow to confirm, etc. DOES ANYONE HAVE SYMPTOMS OF A LIGHTHEADED, "FUZZY" HEAD. RINGING IN EARS. Seems to be my main symptoms. Short term memory issues???

[Mazcd Partner MPNVoice]

hello MPN123 and welcome to our forum. Yes, what you are describing are definitely symptoms associated with having a MPN, many people do feel like this and it can vary in degrees of severity. Sometimes medication can help with the symptoms, has your haematologist discussed the different medications with you? I would suggest that you read as much a you can on our website mpnvoice.org.uk as there is a lot of very useful information on there which I am sure will help you. Best wishes, Maz

[Elab]

Hi , yes like Maz said all tHat symptoms are associated with MPN.

I was diagnosed with ET jak + last Feb.

It’s scary at first but then you are trying to lead #almost # normal life.

With the right treatment, regular blood test and check up appointments you will be well look after.

Any questions let us know everyone on this forum is very helpful

X

[CarolineDavies]

I’ve had ET jak2 negative since 2006 & have exactly those symptoms. I also have low blood pressure so standing up quickly has me virtually keeling over. Food shopping is tricky as bending to low shelves causes me to black out for a second, does this happen to you? My doctor said to try standing up slower which helps. I’ve had people ask if I’m ok which is a bit embarrassing but very kind!

[Wyebird]

Hi I was on clopidogrel prior to diagnosis. ( equivalent to aspirin) I had to come off it for 10 days in prep for an op. I was lightheaded and dizzy and commented to my husband how I felt. The symptoms left once I restarted it. Unknown to me I already had ET. Platelets way over 500. I should never have been told to stop clopidogrel. In fact I should never had the op!!! so yes, I think I did but my meds checked the symptoms.

[Anag]

Hi MPN 123. Oh yes. I had all of those until I got my thrombos down. Sometimes my thrombos go up and I know it because of brain fog, numb fingers and ringing in the ears. Good luck with your testing! Let us know. 🙂

[Smelmeister in reply to Anag]

I’ve stumbled upon your post. Had head ‘aches’ for 2 years but certainly more like pressure in my head, a fullness, fog and fizzing, with ringing and hissing ‘sound’. Also, constantly shattered, low mood, and numb hands most evenings, mornings. I’m 43.... any advice? ❤️❤️❤️

[Anag in reply to Smelmeister]

Whichever MPN you have, you have to keep the blood thin (not too thin) and flowing. When that works, most of the symptoms go. I find the ears tough. If they have been damaged in any way due to too many months or years with bad circulation. The „hissing“ might stay. I find the hissing gets worse when my blood pressure goes up or I’m overexerted. Getting rid of all GMOs, processed foods, non organic food and milk products made a huge difference in my health. So many other problems disappeared, one by one. Very recommended. 😁

[Cja1956]

Yes, what you are describing seem like classic symptoms to me. I was diagnosed with ET in 2008 but mainly because of constant headaches. The headaches went away after I started my hydroxy. But my balance issues and memory problems continued. Dizziness and fatigue have only gotten worse with time. They were times I didn’t know whether it was the medication or the disease that was affecting me so much. That’s why it’s important to keep your doctor informed of any symptoms. If they don’t listen, change your doctor. I’ve had to have my medications changed or adjusted several times over the years. Good luck on this journey. The support on this site is amazing.