thank u, sure glad u saved your foot/leg. U are right about the oozing love dog. Ours keeps us going! Yours sure is cute! God bless! (Here is our oozer, Charley)

Winnie
I am 71 years and I was first diagnosed with PRV on Feb 2016 and in Dec 2018 progressed to PMF.

I am on Jakavi and for me is keeping my blood in control.
AlthoughI don’t have pain in my leg like your husband, I do get cramps and dumbness in my feet and occasionally like someone is stabbing me with a knife that creates agonising pain in a pulse rating affect( coming and going lasting a few seconds at a time).

No one has provided me with an answer or how to combat. You just have to keep a positive mindset! I have found by Turning my feet upside down( toes down) and stretching my toes seems to help!

I recently had a bone infection and was advised by doctors orthopaedic that they wanted to cut off my toe/ foot/ leg to my knee!
I would not let them and convinced to put up a fight with extensive course of antibiotics.
To the Orthopaedic doctors were amazed as they did not have confidence in the treatment of antibiotics and kept amputation on the means of intended action!

Not willing to loose my toe/ foot or leg my heart started to become more Ed erratic which took the doctors eyes of the ball!
I also had ‘Reiki’ and ‘dedicated Energy healing’ from my caring daughter who is a qualified Energy Healer, ensuring a Positive Energy and Positive Mindset and the Power of Prayer! Thanks to God - AMEN!
I now have NO Bone Infection and most important I am still here with 2 feet on the ground.

My best recommendation which is essential, KEEP A POSITIVE MINDSET, VALUE & APPRECIATE EACH DAY ! And… “Get a Loving Dog! Who oozes Love to you!

thanks all for answers. He has been Jakafi for year and half and has had leg swelling before but not this. He had MRI and had age related spinal changes but the orthopedic surgeon did not think this was problem. We do see his MUSC oncologist next month. He may shed some light. Best to all
Winnie

About 3 years ago, I had similar pain in my hip and right thigh. I couldn’t even walk. I had an X-ray and a ct scan and they didn’t find a cause. I then went to my hematologist and she sent me for a mri. They found 3 bulging discs and one was inverted. After 9 days of intense pain, I finally started physical therapy. It hasn’t happened again. I guess my advice is to keep investigating.
Good luck. Hope you find some relief soon.

I have PMF for years. Have not experienced those symptoms. I do get cramps on my lower leg. I am taking Jakafi. Is your husband is any medications? My pain was mainly in the spleen as due to MF is enlarged. Best of luck to him. Try to find an MPN doctor.