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I have had peripheral neuropathy in my feet and now in my hands and forearms.
It is a important to distinguish the different types of numbness-tingling that can occur in relation to MPNs and their treatment.
MPN related paresthesia is a known phenomenon. While not… read more
Probably 6 hours.
I have continuous ringinging in ear and my doc says it's nothing to do with MPN. But I think it is because of low blood flow in head and neck
What could be the possible reasons of this ringing in… read more
Here's another source to consider. It's a 2017 scholarly article that discusses familial cases of MPNs (genetic predisposition. The authors say this: “In our experience, about 7% to 8% of patients… read more
How often do I see them? I’ve read some ppl just see an MPN Specialist and stop seeing a Hema.
Should I see both? My Hema doesn’t put forth much effort or time it seems, like a lot of Western Med. Dr’s.
I think Patient Power is being our own best, fiercest, tenacious advocate, doing our own research despite what a Dr. may tell us, etc.
Hello all, let's starts by saying how grateful I am for this group. I enjoy knowing I can go here and ask questions with overwhelming and writing my own family. You all are my MPN family.🥰 So I am 47 and I am a teacher, and the teachers Union President and the head of the World language department and a mom of 2 and I'm getting older. So everyone understands that by itself is stressful. My question is, how do I know if what I'm experiencing is a new symptom or just life, I'm guessing I go with… read more
Dead Janice,
Type A personality that you describe (energetic, high-functioning people) is a myth that does not hold up in scientific research. It was a myth used in the past to blame illness on the… read more
Yes, I definitely have memory issues!! I'm afraid it's from the ET itself or the HU. I feel so self-conscious when I'm talking to someone + I forget a word or 2, or even forget what I'm talking… read more
for the last 2 years I have been working out at the gym 90 minutes for 5 days a week to get fit and now I am. after being diagnosed with PV last month, I have some concerns wheather working out for 5 days a week can be bad for me or not.
I am 42 and feel very energetic and want to be a fitness coach so I am really looking for a science based recommendation about this.
Thank you
Hi Immortalist,
I'm 35F with ET
i found out that there is no real limitation to the activities we are doing, beside the the general advices/indication (ie. no contact sports, no skuba diving, etc).
… read more
I have continuous ringing in ear and my doc says it's nothing to do with MPN. But I think it is because of low blood flow in head and neck.
What could be the possible reasons of this ringing in the ears??
I've got big time ringing too, but some of it is from all the loud music over the years. Having ET has definitely made it worse. Over the years I have gotten used to it and I'm able to put it out of… read more
Hi Edna,
Tinnitus in ET and PV is considered to be due to too many blood cells (platelets in ET and red blood cells in PV) in the blood vessels
"ET may also cause hearing problems, such as tinnitus… read more
