Haematolist appointment

[Jody00]

Hi all had my 3 months appointment over week she ask how I was doing firstly said okays apart from my pins needles getting worse in my feet and hands sometimes go up my leg or arms I've had like a bad cramping ache pain in my left top arm but no other symptoms been getting few like tingling headaches,so she said your platelets have gone up bit more than normal do to 823 then ask me if ive had any infections which i carnt recall if i had any in last 3 months ,got to keep an eye on my symptoms if get any worser then to go upto A&E she updose now my 75mg aspirin to have 2 a day to see how I get on then said when my platelets reach to 1,000 then need to talk about with treatment going to go on, told me on plane to take my 2 aspirin before getting on the plane, to wear flight stocking to keep getting up for walks and drink plenty of fluids,but instead of ringing A&E I rang doctors next day with my arm told doctor got pins needles In my hands and feet so there are treating me for musculoskeletal which I think his mostly right see how I get on with the course but nothing change with pins needles has yet,hope everyone wellXx

[SDJD]

Aspirin helps my pins and needles in hands and feet which is a symptom of MPNs. Am also on Hydroxycarbamide so don’t know if that also helps the pins and needles. Best wishes. Suzy

[Jody00 in reply to SDJD]

Hi thanks for replying back might take a few weeks for pins needles to wear off has I've only just started on 2 aspirin a day was just on 1 aspirin a day but pins needles in my feet and hands got worse so haematology started me on 2 aspirin just few days ago .thanku and best wishes Xx

[hunter5582 in reply to SDJD]

The short answer is yes - hydroxycarbamide does tend to decrease microvascular issues like erythromelalgia.

[Scaredy_cat]

I've been getting something similar for over a year. I understand that this can be a problem with ET and PV because of problems with the circulation at the extremeties. However I'd describe mine more as tingling rather than pins and needles and don't have any reduction in feeling. Mine too started in the extremeties and moved up to all my limbs,back,scalp and parts of my face. As I have mf the haematologist didn't think it was related to that. I've been undergoing various tests (vitamin levels, iron, blood sugar) and neurology investigations, do far without anything being found. Do keep us informed on your progress.

[Cb1001 in reply to Scaredy_cat]

I have the same ‘tingling’ that progressed up my body like you describe. Also I haven’t got anywhere with various blood tests etc . Neurology suggestion was it being a ‘software’ issue rather than ‘hadware’ issue So a functional neurological disorder (FND) and basically just told me to look at the neurosymtoms.org website !If you look at that website I don’t think our symptoms would come under that umbrella - so not v helpful at all ! I remain in limbo 🙁

[Smudger0122]

Hi JodyI have essential thrombocythemia calr and was suffering with tingles in hands.

Since changing to clopidogrel this doesn’t appear to happen as often?

Aspirin was giving me strange stomach feelings, gassy like reflux.

Maybe worth asking?

My platelets have been as high as 1665 back in March, last check 2 weeks ago 408.

Down to hydroxycarbamide, possibly talk of going onto interferon at some point in the future.

Keep safe

Smudger

[hunter5582]

That sounds like erythromelalgia, which is a known MPN symptom. It sounds like this is what your provider thinks that it is. nhs.uk/conditions/erythrome....

Note that paresthesia (AKA pins-and-needles) can be associated with MPNs.

nhs.uk/conditions/pins-and-...

The difference is that erythromelalgia is a microvascular symptom while paresthesia is caused by an issue with peripheral nerves. Increasing the aspirin dose to 2x/day will resolve the issue for many people when it is a microvascular problem. Hopefully that will be the case for you.

Note that when my platelets used to get upwards of 800, I experienced an increase in hemorrhage (increased bleeding/bruising). The aspirin can exacerbate this issue. I would suggest it is worth the risk if the aspirin prevents the erythromelalgia pain.

Hope all goes well and you find complete resolution of the pins & needles.

[Jody00]

Thanku guys for replying back been very helpful especially hunter got my letter threw platelets has gone up to 849 got it mistaken but hopefully 2 dose aspirin will take effect on me in few weeks with symptoms I have with pains threw out my body the tingling feeling in hands feet legs arms still the same from last week my haematologist suggested me to have a word with doctors few months back to ask if could be fibromyalgia doctors said to me am too young so I told my haematologist or she was like ohh,but said let's see how I get on with double dose aspirin might take a few weeks for symptoms to wear off maybe see how get on in few weeks.thanku very much Xx