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Haemo not helping with symptoms!

Hi all,
I had my diagnosis of ET 6 years ago and have been on watch and wait since. On diagnosis I had severe headaches and blurred vision, now I’ve developed significant pins and needles, dizziness, bone pain and fatigue. I’ve told my haemo about these and she keeps saying it’s not the ET, yet the GP thinks it is. I just want someone to help me manage these symptoms but no one is willing to help!
Has anyone got any advice?
Thanks x

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Hello @Loverlygal - I am an ET patient diagnosed and on treatment over 15 years. Yes all the things you mention are very typical ET symptoms !! Sorry you are suffering them all as I know they are not fun. First thing would be to make sure your consultant is a MPN specialist not “just” a haematologist, we all really need a team that deal regularly with MPNs as experience in it is essential for your care. Perhaps chat to your GP about, as they sound switched on, as it is possible to get referral to another hospital where there is a more specialised team, if practical for you. Second is having regular blood count checks, so a pattern of your platelets can be found - if you have the headaches and visual disturbances it is good to see how the platelet levels are regularly to see when treatment may be needed. Do you know what sort of levels your platelets are at? I am sure you are a good water drinker as that helps a lot with ET so do keep that up and work around the fatigue, often it’s a case of small bits in the daily routine and featuring in rest times too - often readjusting life a little. But do chat to your GP and get to a MPN consultant as especially the headaches and visual disturbances need to be looked at if they are regularly happening on most days rather than a now and then thing. Keep us posted

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Hi @Loverlygal, @Jilly20 has given you good advice.
All I can add is to keep notes on your symptoms, medical history, family history, medications, allergies etc. Also all the questions you have and how your daily life is impacted.
Then you can ensure you cover everything at all medical appointments.
Look after yourself and please let us know how you get on.

That sounds really frustrating @Loverlygal!
Have you got a clinical nurse specialist or key worker you could talk to?

In case it can be useful at all for you we held this Q&A on Effective communication with treating teams last year - Ask the Experts: Effective Communication with your Treatment Team - YouTube
And MPN Voice have this webpage about talking to treating teams - Talking with your doctor – MPN Voice

Please do feel free to give us a call on the support line if you want to talk things through.

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Hi all, thank you for your responses - it’s nice to be able to vent where people understand and have experience of the condition.
I saw a neurologist yesterday on the insistence of my GP who wants to rule out anything else more than anything. The neuro agreed that I have no neurological reason for my symptoms, and has suggested I go back to the haematology team so back I go!
I unfortunately only have contact with a specialist nurse in haemo - I never speak to my consultant, and so I do feel that there is some understanding lacking in terms of how the symptom burden in ET can present. I have spoken to the GP previously about seeing an MPN specialist but this was rejected offhand as the GP said that the local health board haemo is as specialist as I need.
My platelets are currently hovering around 680, which is lower than they have been for a while, which doesn’t tally with the worsening of my symptoms.
I drink lots of water and have reduced my caffeine intake recently, and eat plenty of fruit and veg so feel like I’m doing my bit. Most frustratingly, I am off work sick at the moment as I have had such an issue coping with my symptoms- I just want to get to a place where I can go back to work!
I will definitely start keeping a symptom diary and will go back to the haem nurse for more advice though. Thanks again x

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Please let us know how you get on @Loverlygal it must be so frustrating for you.
The main thing is that you look after yourself.

I completely understand your frustration with mixed messages from medics @Loverlygal . It just makes the struggle so much worse when the people who are supposed to be looking out for you don’t seem to understand what’s happening to you. I hope you’re able to resolve this soon and get the support that you deserve.

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