Tingling in toes

General chat
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Hi again. I was diagnosed with Mylofibrosis and still waiitng for the genetic results to decide whether I will be given ruxolitinib or start the cell stem transplant. I frequently get a horrible tingling sensation in my toes and would like to ask if anyone has had this issue. Thanks

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Hi @CarolCull.
I hope people can share their experiences with you. It must be a very uncomfortable. What have your medical team said. Is it a common symptom?
How are you feeling about things at the moment? Will you have to wait long for the results of the genetic tests?

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I haven’t mentioned it to the team yet. My next appointment is on the 5th June and hopefully theyvwill have the results. I have been told to be very patient as it seems haematology results are slow.
I’m feeling ok and quite upbeat as things are happening at last.
Will stay in touch and hopefully someone in the forum can shed some light.
Take care
Carol

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Hi @CarolCull, @Nichola75 has asked you if you have told your medical team.
It is good news that you have an appointment on the 5th June with them.
Yep, please do stay in touch and I hope someone will be able to share their experiences.
Really look after yourself and be a ‘patient, patient’

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Is it as slow in the UK? I am in the north of Spain, I have no complaints regarding the Spanish health system, but just wondering, in general, is it the same there.

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All I shall say @CarolCull is that the NHS service has been brilliant with me and I have had cause to use them a lot recently, but some results or appointments take longer than others.
Look after yourself

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Hi @CarolCull, one of the regular symptoms of Myeloproliferative neoplasms (MPN) is the tingling in the hands and feet, part of our blood trying to force it’s way around our veins and trying not to run out of steam at the extremities.
One of the things the SCN told me is we should be told to check our hands and feet on a daily basis for any colour changes or damage because of the blood flow.

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Thanks for the reply. I’ll keep an eye on them. Im also trying to figure out when it happens, what wa I doing, or just did before it started. I think its a good idea to keep a record of this.

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Brilliant idea to keep dated record of symptoms and how they affected you @CarolCull
Then you have it ready for medical appointments.
I have found years later how I felt at that time is so interesting.
Be kind to yourself and please do keep posting

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