Weak lower legs and thighs

[Garden987]

Does anyone suffer from weakness in their legs. I can barely walk. I have ET/CALR and my fatigue is unbearable. Have an appt. at CFS Clinic in Bristol - my haemo. Wants to wait for results as she thinks it could be connected meanwhile I am really struggling even though I climb one and a half flights of stairs countless times a day. I am 80 so maybe it's old age! Feel generally unwell to the extent that I haven't the energy to go to see my GP.So very tired. Any thoughts or comments will be much appreciated. Mary

[Hidden]

I too have ET CALR, I have lower leg cramps and muscle pain particularly in hips thighs. I am 62 and am also struggling with fatigue, I guess it could either be age or the condition hard to tell. The pain and fatigue is far worse when I don’t walk some distance daily. Hope you get some answers from the haem.xx I take Interferon which I believe also can cause these symptoms. X

[isimmy]

Hi Mary.

I have ET and found that I started to suffer from fatigue and aching thighs when I commenced hydroxy 15 months ago. However my symptoms are occasional, rather than permanent and when I mentioned this during my hospital visits the Consultant was not unduly concerned.

Hope your test results are fine.

Good luck.

[fee13 in reply to isimmy]

I had same symptoms with hydroxy until I could hardly walk & was in constant pain. They switched me to interferon and symptoms have vastly improved.

[Inca]

Yes Mary,Me too.I am 79 and maybe as you say it is age as well as our blood condition.I keep walking ,my dogs are G S Ds,very big and strong,I have to admit the young one 'knocks me about ' a bit with his enthusiasm to play,never thought that I would say that.........catches me on thighs and I am lucky to stay upright !! My mares now I cannot see to,hubby must be with me,tho they are old and very gentle,if they rub with their heads on me

I would be likely to tumble!!!So you are not alone,also have pain in my feet

just now,I do wonder what next,Arnica massage oil is good,if you can find the energy to use it,often wonder if old ladies without M P Ns get tired?

You are right to keep using stairs,it's aerobic I think.Keep Going Mary.

Age is just a number!!!xxSally

[CalrType1]

Hi Garden987. Yes, achy and tender leg muscles. I am 60 and have CALR type 1, ET. I have the daily body aches and pains too. Grocery shopping can drain my energy. I think it is from the type of mutation we have . CALR does a lot of regulation in all our cells. Experts still trying to figure all this out I guess. I receive no real good feedback or facts from Mayo Clinic.

[plum27]

I struggle with fatigue and poor appetite so that I am wasting away and not getting much exercise. My legs tire easily and particularly while I was on HydroxyUrea, arthritis was becoming annoying in one leg (hip and knee). Since starting Pegasys Interferon, my arthritis is improved - not bothering me most days and I'm not as tired, though still need a lot of sleep and my legs aren't good for much more than walking. I need to try harder to exercise... I'm only 60 - it's a worry.

[George1976]

This is a very old post but I thought I would check to see how you are. I've also got weakness in my legs, mostly lower legs and feet. I've seen a lot of doctors and am coming around to thinking its the platelets damaging my nerves through dysfunctional platelet aggregation as I am type 2 CALR positive. This could be in concert with something I've developed call Myelin Associated Gycoprotien antibodies that attack nerves. Still investigating that. It's an immune related thing that may or may not have been triggered by COVID or possibly something related to pegasys. Not sure exactly but I'm starting to think I may have to rid my body of the mutant clone (MPN) as they say before I will see resolution.

[Wendrew in reply to George1976]

I’ve had problems with my legs for years but always attributed it to lower back surgery years ago. What has always amazed me is how the feelings come and go. Until I read your post it didn’t occur to me that that could be yet another symptom of PV as well. I guess it’s the gift that keeps on giving….

[George1976]

yeah this article describes how PV in particular has been linked to weakness. I figure ET is likely to be implicated as well since it’s dysfunctional platelets too. Plus if you have back surgery with MPN gotta watch out for blood clots on the spine. I stumbled over an elequis warning about it this week too. I’ve had probably dozens of theories about why I’m having so much trouble but dysfunctional platelets/blood cells generally apparently are prime suspects. Here’s the article on PV. ncbi.nlm.nih.gov/pmc/articl...