Myelofibrosis and tingling limbs

[Scaredy_cat]

Myelofibrosis and tingling limbs

I've recently been diagnosed with myelofibrosis having had essential thrombocypomia for over 20 years with no symptoms and only low dose aspirin. My white blood cells are normal, my platelets a little low and I'm slightly anemic. For a few months I've had tingling in my hands, wrists, lower arms, feet, ankles and lower legs. It appears be progressing. Is this a known symptom of MF, does it get better/worse, is there any treatment?

[Otterfield]

I also had ET for a long time (19 years) before a diagnosis of MF last year. I haven't had your symptoms exactly but I have had all kinds of odd things happening to my legs especially. I had swelling, rashes and pain for six months before diagnosis. They were so swollen that when they went back to normal size I instantly lost 10kg! Now I have knee pain which is possibly due to some damage from the prolonged swelling. Sometimes my arms feel odd rather than painful. Occasionally my ankle or hand swells up painfully now but it clears in a couple of days. I honestly don't know if all this is an MF symptom - it's certainly not one I've read about, but possibly just something we have to live with. Are you on any medication for MF yet? I am on Ruxolitinib and it has made huge difference to my wellbeing, to the point where I feel mostly normal apart from having to take things a bit more slowly and rest more often.

[hunter5582]

The short answer is yes. The condition is called paresthesia.

"Myeloproliferative neoplasms (MPNs) can cause a variety of symptoms, one of which is paresthesia, a feeling of numbness and tingling often described as “pins and needles” by people experiencing it. In one study of people living with MPNs, more than 61 percent reported feeling numbness as a prominent symptom."mympnteam.com/resources/num....

Hope that helps.

[Scaredy_cat in reply to hunter5582]

Thanks hunter5582 . I wasn't sure if it was related to the MF or some new disease to enjoy! I am seeing my consultant on Monday so will raise what can be done to help. I'm not on any medication yet as I've only be recently diagnosed. My main worry is that it doesn't progress further or to numbness. Does anyone else have any experience of treatments and progress with this symptom?

[Pte82 in reply to Scaredy_cat]

Scaredy_cat try a B complex for your tingling along with the recommended level of magnesium for your weight and use a form of thiamine called Benfotiamine in addition to the B complex. Locate a complex with the methylcobalamin form of B12 and folate instead of folic acid. Be aware of anti thiamine factors that reduce thiamine. Research your symptoms for B vitamin deficiencies especially thiamine. Check with your consultant before using any supplement.

stuttersense.blogspot.com/2...

[hunter5582 in reply to Scaredy_cat]

It depends on what is causing the paresthesia to happen. This is something to review with a MPN Specialist. You may find that the meds used to treat the MF will help. Hopefully so,

[dancingelephant]

I was diagnosed a year ago with MF, and previous to my diagnosis had problems with my hands. I had tingling and numbness. Some pain in my right thumb which I still get, and sometimes get blue colouration. My feet are not so much of a problem, but I do suffer a lot with cramps, hands and legs.

My own solution as no-one has any other ideas is to take co-codamel twice daily for the pain. This may sound drastic, but it works for me. I have had some physio on my hand, and his helps alleviate the symptoms. I have'nt heard of paresthesia - but am about to look it up. I wish you well, I think that sometimes these extra symptoms just have to be put up with.

You don't say if you are going onto any other medications - but I was advised by my Con. not to drink tonic water - which I imagined would be good for cramps - as it would interfere with with the absorption of my Ruxolininib.

Let us know what advice you get from your Consultant.

Best wishes, Bonnie

[Inverter]

It’s exactly what ti feel and what lead to get tested for JAK2 and resulted positive.

In my case If I do 1 hour doing spin bike and aspirin 1 time a day , And eat avoiding bad fat , those symptoms disappear, Or little bit during the night and when I wake up , because many hours in bed.

The best solution for me is eating good, 45 -60 minutes spin bike morning and then 45-60 minutes in the evening.

By the way not sure yet if I have ET, PV or MF, Wednesday I should have the final diagnosis and thinking to be straigh away MF at 32 years old sounds very scary and sad for me and for my partner.