Follicular and poor circulation in hands and feet

Watch and wait
41

As always Erica, you give such good and valid advice. As you imply, it is comforting to know that others are more or less in the same boat as yourself. That knowledge can be so, important to us, and encourages many of us, to carry on, Surviving’ I suspect.

All the best Ron…

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42

Hi i just seen this i have Et jak 2 and on hydroxycarbamide i am having terrible time with my fingers and feet but feel knowone knows whats going on i am wating to see vascular… i am so fed up with it … i really hope you get to the bottom of it this has been going on from jan for me …:+1:

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43

That sounds really miserable @SMIDDY. I hope you get some relief soon.

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44

Hi, can you elaborate please, I posted a few days ago that my fingers and toes feel like they are burning, is that the same for you? spoke to consultant and GP today neither knows what’s causing it

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45

Hi @Lynnrobo,
I hope you are doing okay this evening? I’m sorry to hear you are struggling with symptoms. You mentioned that you raised this with your consultant today but did not have much feedback. Unfortunately we do know that tingling and altered sensation can be a possible neurological side effect of an Myeloproliferative neoplasms (MPN), such as Essential thrombocythemia (ET). Such symptoms can be very varied between individuals and not everyone will experience it.
It can be helpful to keep diary of when and how frequent this occurs in order for you to raise this again with your team.

Should you prefer to talk things through, please do know that our support service team is on hand for you- 0808 2080 888.

Take Care, Lauran

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46

Hi Lauran
Thank you so much for your reply, I have trawlled the Internet for this information and found nothing. And the consultant was very definate it wasn’t part of Essential thrombocythemia (ET). It’s always a massive relief to have a reason for things, and if this is part of my condition then so be it, I’ll deal with it. It’s the not knowing that drives you round in circles. So once again thank you

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47

Hello @Lynnrobo. I sympathise with the distressing symptoms you describe. When my platelets were high in number I experienced something similar and my haematologist said it was due to ‘pooling’ of the platelets. It was worse at night and felt like my feet were burning. Thankfully now that my platelet count is no longer high I don’t get these horrible sensations. Hope this reassures you. I wish you well. Willow x

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48

Hi Lauren, do you know if there’s anything that gives relief to burning fingertips?
I went to the chemist and bought emla cream, but it was £6, tiny and you need to use lots :pensive:
They are really uncomfortable, particularly from t time onwards for some strange reason!
Thank you

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49

Hi @Lynnrobo, sorry to hear you’re continuing to have these symptoms, they sound really troublesome for you. Do you mind me asking if you have a Clinical Nurse Specialist contact as part of your team? If so, it may be worth getting in touch with them as they may have some suggestions for you? As Lauran said do give us a call if you’d like to talk anything through (0808 2080 888).
Best wishes,
Tanya.

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50

No not burning. Cold fingers some time turning blue and cold feet with infected ulcers.
doc says that it could be circulation . But i dont think they know what is causing it ,still no appointment for vascular. sorry i took so long to reply. I hope you are well . Smidy :+1:

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