Numbness and heaviness in legs

[Mudmaker]

Hi everyone has anyone experienced heaviness and numbness in their legs. For a few years now when I was in a swimming pool I felt as if I had shoes or boots on. Now I have that feeling all the time. Also get bad cramp at night in my thighs. I also have numbness and tingling in my arms at times.

[George1976]

I have heavy, weak feet with some numbness and very heavy dizziness in my head. CALR ET here for past 10 years.

[Anouchka]

Hello Mudmaker - you do not say what MPN you have…. I too suffer from the same heaviness in legs and tingling feet and way more night cramps but usually in calves. Nothing in arms (yet?).

I have PV. JAK2 positive and am on Jakafi 20 mg 2x/day. I’m told leg symptoms are side effect of the PV. Nothing yet said about the cramps but am seeing the doc in about 10 days time….

[LittleLuna]

I have Pac and heavy lead legs is a biggy for me. Not sure if its related to my shortness of breath too and oxygen flow in blood getting to where it needs to go but for me thats what it feels like.

Mine is usually when walking up even slightest incline, stairs etc. No numbness or cramps in legs thankfully but numb hands for me

I think MPN come with a weird array of symptoms which at times can be challenging to work out or alleviate

[Hopetohelp in reply to LittleLuna]

as LittleLuna said. Same

[leefsu97]

hello, I too experience these problems with my feet and legs. I feel like I’m walking through water. my feet have issues with numbness on the bottom with tingling and sometimes excruciating pain, especially in the morning when I first wake up. I have been told it’s caused by my PV, I have Jak2 mutation as well. I do not like hearing that because it’s such a vague answer. I really didn’t notice any issues with my legs until after my use of hydroxyurea.

[Mudmaker in reply to leefsu97]

I was on hydroxyurea for sixteen years. Have been off it for past two years on Ruxolitinib but can’t tolerate a high dose. So now on both for past two months but feel problem is getting worse.

[leefsu97]

OK, I couldn’t tolerate hydroxyurea and was only on it for four months before starting Jakafi 20 mg bid. I was on the rux for about 15 months before my liver enzymes were off the charts. Way too high. When I stopped taking ruxitinilib my liver enzymes normalized. I am now on Pegasus 45 µg per week. I am waiting on my insurance to approve Besremi 🤞 I am unsure if hydroxyurea or ruxitinilib or both have caused this problem with my legs but like I said, I never had the issue before I started treatment and I supposedly have had PV for a really long time just didn’t know until I had a heart attack and was diagnosed in the hospital. That was four years ago so it’s really hard for me to believe that my leg issues are directly related just to the PV and not the treatment. It’s kind of where I’m confused and concerned, since my leg issues are not getting better

[Mudmaker in reply to leefsu97]

Hope you get approved for Besremi my haematologist has mentioned it as an another option. I am so grateful for our NHS here I’d Scotland. Good luck.

[MWxxxx]

I have a heaviness in my legs, especially when I walk uphill, upstairs etc. I also get really breathless. I have PV and take hydroxy but these symptoms started before medication and were what led me to going to the GP (repeatedly) before getting my PV diagnosis. I sometimes think my symptoms are related to low ferritin. I occasionally have to have a short course of very small amounts of iron and I generally feel better for a while after. Although this must be agreed by Haematologist first and not all like prescribing it. When I have been prescribed it, it has been well monitored and has not increased my red cells too high.

[LittleLuna in reply to MWxxxx]

interesting to hear others have breathlessness and lead legs. Certainly a very annoying set of symptoms.

I have been told no iron at all but would love to know it if could help… just a little.

I am due to speak with a Functional Medicine Specialist soon and hope they can advise on holistic things to help with PV symptoms

[MWxxxx in reply to LittleLuna]

I guess it depends how close your bloods are to the maximum and whether you have low ferritin. I must have a degree of "play" in my red blood count as the iron I have been prescribed has never pushed me above the maximum. When I have been prescribed iron I have only been given 1 week's worth of a low dose and then told to take them every other day for 2 weeks. I then have had additional blood tests so it has been closely monitored. Some haematologists are very much against it and will refuse no matter what - but it would be worth finding out if that is the reason in your case, or if it is your blood results which are preventing them for prescribing. Either way I hope you managed to find something to help.

[Windy51]

Yes I have the same problem