MPN and Nueopathy

[Jerrymohler]

Anybody associate MPN with neuropathic pain? I get terrible burning nerve pain in my feet. ET JAK2+ 72 years old.

[Wentry]

Hi Jerry,

I'm 56 with ET JAK2+ aspirin only. I don't have pain but I noticed numbess in a couple of my toes a few months ago and didn't really think much about it. A few days ago I noticed that my little finger and ring finger on my left hand have become numb too. Because it's not just my hand I'm suspecting Peripheral Neuropathy after looking up possibilities, but people seem to report the pain rather than numbness with MPNs, maybe it starts as numbness and progresses to pain. I don't know if anyone else on here suffers with either pain or numbness, hopefully others will reply 😁I guess a trip to the GP may be in order to see what he thinks as my next haem appt isn't until October.

Hope you get some relief, are you on aspirin or chemo?

Wendy

[Tico in reply to Wentry]

Hi wendy, i'm etjak2,ad numbness just b4 diagnosed & continue 2 ave it periodically, i suppose u just get used 2 it & accept it after a bit. The problem i find more difficult is now after having a mpn 4 over 10yrs is i find the bone pain as got steadily worse over time, especially in my larger bones & also my joints which i find particually hard as i'm still only 48yrs & i want 2 run & play wiv my beautifuj grandson & grandaughter who's yet 2 be born.(only a few weeks away!) So must put everything else to the back of the mind! Anyway wendy hope all is well wiv u & u r recovering from ur skiing accident u mentioned previously. Atb,tina.

[Aime]

Hi Jerry and Wendy, I have just an op to release ulnar nerve around the elbow because I had numbness and pins and needles in my ring and pinkie fingers. I also have two numb toes (next to my big toe) so just waiting until I’m over my op, then back to my GP with my toes and also a numb area on my outer thigh.

I have PV, not on any meds but have osteoarthritis and a tendency towards nerve compression issues so not sure if I can blame my PV. I always say, anything new is best checked out as it’s easy to blame our MPN for everything.

Kindest regards Aime xx😺😺

[Ebot]

Hi. Please talk to your haem about this as a matter of urgency. I had some tingling twitches in my toes but then repeated episodes of burning ‘red hot poker’ stabbing pains over a weekend. The sort that made me hang on to the kitchen work top and breathe deeply! The haem did not like that and I was told to call in to the CNS immediately if it happened again. Burning pain generally in hands and feet can go with the MPN territory and you should get it checked out. You may need a change in meds. Let us know how you get on.

[Mufftreacs]

I am 77 and have had ET for 12 years. Almost from the beginning of taking HU, the big toe on my left foot went numb. I have had uncomfortable burning in my feet for many years. Have sort of got used to it.

I do think the heat exacerbates the problem but as I live in Australia for most of the year, I have little choice. I wear fit flops and birkenstocks most of the time to keep them cool and help exercise my feet at the same time.

I do get cramp in my feet when I have walked any distance but take magnesium tablets when I am suffering. They are brilliant!

Hope this helps.

[Bluetop]

I have PV and take hydroxy and asprin. I have had occasional numbness in my fingers, lasted about 10 minutes, just in one finger. But not had any problem for some time now -I assumed because of the heat.

[Johnsb]

I have JAK2+ and am also borderline diabetic. I will have bouts of hand and foot pain like you describe. What I have found is that it occurs most often when I an not well hydrated, I also have issues with my hands and feet getting cold when the weather starts to get chilly. Just part of the joy of PV!

[Angelinagaffer]

Yes I get it ,also in my fingers, put your feet on cold stone / paving slabs ,it helps, or put a water bottle in freezer then roll your feet on bottle. I have terrible head pains too, I find hot water helps that. Exercise the toes ,crunch and release, it helps.