Has anyone with PV or other MPN experienced sensations in calves and feet. The sensations are in the calves like mini cramps and in feet of a ‘tightening’ feeling on soles of feet.
My Haematologist says never heard of it and discounts the PV as a possible contributing factor.
I would be interested to know if anyone with PV or other MPN taking Hydroxycarbamide has experienced anything thing like or similar to what I have described above.
I am new here this is my first post so apologies for the ramble
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Edinburgh1953
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This sounds to me a little like "restless leg syndrome" which can be a symptom of iron deficiency. My legs can feel a little like that especially late at night. Not painful, but a mildly unpleasant muscular sensation.
It can be hard sometimes to sort out what is PV related and what is not. I have also had the leg cramps. Mine were magnesium deficiency related. Iron deficiency can also cause cramps. If the cramps persist and are bothersome, it is worth doing some basic diagnostics to sort out what is gong on.
Do note that pain in the feet/toes, particular the big toe is a common symptom pf PV. This is a microvascular symptom. I have also experienced this while off aspirin. Going back on the aspirin fixed this immediately.
I am wondering if your hematologist is a MPN Specialist. PV is a very rare disorder and most hematologists do not have the KSAs to manage it optimally. Just in case you need it, here is a list. mpnforum.com/list-hem./ .
How wrong is your Haematologist! First of all PV can cause DVT in the calf so a change in sensation should never be dismissed.
Before I was diagnosed I kept going to my GP because of the strange sensations in my feet. It felt like there was a layer of “something” between the bottom of my feet and the ground, even when barefoot. I compared it to trying to scratch an itch on your leg through a thick pair of jeans. I had nerve conduction tests to try and find out what was wrong.
Unfortunately, this is another case of a GP not listening to you when you know your own body and when something is wrong. It would take seconds to look up the symptoms of PV which include loss or change of sensations in the feet. Once I was put on Hydroxy it eased the sensation quite a bit.
Print out the replies on here and find the symptom list for PV to show your haematologist. Just because he/she hasn’t heard about it, doesn’t mean it isn’t true xx
Hi thank you for reply it has been most helpful. My thoughts are same as yours about Haematologist saying he has never heard of it. At some stage of their career they will come up against a first about any condition experienced by a patient.My GP has been the opposite in that he listened to my relating of feelings in my calves and feet. Explained what could be done medication ways and the options open to me. We agreed to wait till 22 August to see if any improvement and if not be referred to Neurologist but to press also Haematologist that issue still exists. GP will help in anyway he can.
I have phone consultation with Haematologist next Wednesday and thanks to the responses on here have more information to throw at him
Than you again
My feet issues developed into severe ones - and I went to every foot specialist in Wellington, NZ. Not one of them could help or knew what it might be. IT hurt too much to put shoes on and I could not walk. (and interestingly - this was b4 my PV diagnosis.After PV diagnosis I was looking into it some more and found erythromyalgia (sorry about spelling). Went to doctor and he agreed - but said asprin would help. Well, I was taking that already, and it was not helping. I was in complete despair.
Doing further research about what should I eat in general, I came across someone who said about bone broth (I think it might have been for arthritis). He said to drink a heap of it for 2 weeks and see what happened. It was nothing at all to do in relation to my feet - but after 1 week - my feet were getting incredibly better. Imagine the surprise. I kept on with it - gradually reducing the amount and now have a large mug full every morning as a maintenance protocol. I am sure it is helping elsewhere as well. But it sure is good to be walking again!!
As others have said - magnesium helps too (most of us are short of it, and best absorbed through the skin). I used that a lot before the bone broth - and peppermint essential oil. But the bone broth takes the prize for me.
If you want to try - the recipe I use for the broth is in my profile.
I have RLS restless leg syndrome and since being on hydroxycarbamide it’s much worse as I’m running low on iron which is a known factor in RLS. Traditionally I would need high ferritin levels to keep RLS under control. It’s a frustrating no win situation.
FoodieI find the responses to the question really interesting and very helpful as I was thinking about posting a very similar question. My feet have that feeling you describe so well as a layer between my foot and the floor . I also am experiencing pain and toes getting very sore. My chiropodist is very helpful and has tested for neuropathy. Next port of call is my haematologist. I have an appointment on September 1st. My condition has been diagnosed as ET CalR+.
Thanks for posting this as I have had this several times over the years but it wasn't bad in my calf. Last night took the cake though because I actually woke up in great pain from pain in my calf. I am now thinking first and foremost it is from low iron as my doctor wants HCT pulled at 43 which all other prior doctors put it at 45. I had my knee replaced in 2019 which the last doctor said I had a failed knee replacement and have swelling around that knee. I am wondering if this could also be causing that pain?
I am on hydroxycarbamide and I have cramps in my feet and left calf at night I am only six weeks into diagnoses so I will be telling my hematologist at next appointment
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