Diagnosed ET - wondering about symptoms

[carlyjo]

Hi there. I've just joined the forum after being diagnosed with Essential Thrombocythemia in January following a cerebellar stroke in Oct. It's caused by the faulty MPL gene. I've been on hydroxycarbamide since Jan. Also on clopidogrel, perindopril and atorvastatin. I'm on the road to recovery and was v lucky regarding the stroke and not been left with any permanent damage and I'm getting used to the drugs. But every now and then - last time 2 weeks ago, I start to feel quite unwell - light headed and just odd. It last happened about 8 weeks ago. It's frustrating and disappointing as I don't know why and I am feeling so much better - almost back to normal. Initially I had this almost nightly after my stroke. I've been at doc/hospital etc as it can feel similar to when I had the stroke so I need to be checked out. Usually my vitals are all fine. BP was up and down last time. They can't tell me what's causing it. There is sometimes a suggestion that maybe I'm anxious which causes it. I've explained I'm perfectly happily going along and then it happens. Then I might feel anxious! I practice mindfulness which helps enormously so that's not the issue for me. I'd be really interested to know if there are symptoms associated with the drug or even the ET. It could even still be the impact of the stroke as it was the cerebellum to do with balance . I definitely had issues with the hydroxycarbamide initially but thought I was getting used to it. My platelets are currently down at 400. They had been up at 950 at time of stroke. So my bloods should be normal. Though I still get tingling in toes from time to time. Anyway sorry for the long post. I'd love to hear if anyone has had anything similar happen . Just feel the medics know so v little about the ET in particular and I suppose it would help to know what's happening. It's worth adding that on the last couple of occasions I'd been out walking - not more than about 6000 steps or so and maybe I was a bit dehydrated? Who knows. Any info would be most welcome. Thank you for reading 😊

[Hidden]

Hi Carlyjo

Very sorry to hear you have had a stroke, I have had ET for 4 years at 63. well since diagnosis. I think I might be one of the lucky ones as I have never had any symptoms of this disease. I am very active working 4 days a week, swimming Tia chi, walking, and actually my work is very active on my feet for 8 hours. Mindfulness and meditation is great, got me through a terrible time of my life around diagnosis time, anxiety ++++. still continue to do this from time to time. Stress and anxiety and do terrible things to your mind and body. I ended up in ED twice with palpitations just before I was diagnose with ET. I also had a lot of personal trauma going on at that time!

Hope you find some answers

Lyn NZ

[carlyjo in reply to Hidden]

Thanks Lyn . I've started a wee Tai Chi class which I love -I did it about 20 years ago .It's all coming back 😊 I'm hoping to get back hillwalking -that's just taking a bit longer than I would have hoped. Glad to hear you're so active and symptom free 👍😊 kind regards ca 😊

[Mazcd Partner MPNVoice]

Hello Carlyjo, welcome to our forum, very glad to hear that you are recovering from your stroke. A lot of people do have moments of feeling odd, with dizzy spells, confusion, light headed, and can be put down to the ET and the medication, though as with any symptom you are experiencing, it is always best to discuss with your haematologist and doctor.

We have a lot of very good videos on our website of patients and specialists talking about MPNs, symptoms, medications etc, so have a look at some, it might help. mpnvoice.org.uk/about-us/vi...

I know that the lovely people on this forum will reply to your post with their experiences, which I am sure will help you. Kind regards, Maz

[carlyjo in reply to Mazcd]

Thanks Maz. I've just had a wee look at the videos -very helpful .It's useful to know other people's experiences , especially regarding symptoms when the medics aren't really sure what's going on. It looks like a really good forum .keep up the good work 😊 Kind regards

[Jlah]

Hi Carlyjo

I had a cerebellum stroke last year. Then diagnosed with ET and fibrosis 4 months later. Similar experience. Felt really well straight after stroke and as it affects balance I had no signs. Month later started to get woozy, feeling odd, brain fog, blurry vision etc. Happens about every 3 weeks/when stressed. So frustrating when drs just kept saying it was anxiety and psychosomatic. I did use to panic after the symptoms which probably made it worse but they were real. This site and the kind words have helped me significantly. Take care. Jacquie x

[carlyjo in reply to Jlah]

Thanks Jacquie. It is really helpful to hear that. I can very much relate to this. It is frustrating that I've found going along perfectly well and happily then feeling ill. Naturally then feeling anxious and then there's a suggestion it's because I'm anxious!! My own gp did say to me right enough he understood what I was saying after another one tried to give me vallium!Still it reassures me that your experience is similar so maybe it's not that unusual and is just simply what happens sometimes with this . Thanks so much for replying and wishing you well Carolann x