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.
Myeloproliferative neoplasms are a diverse group of blood cancers. The most common MPNs include polycythemia vera (PV), essential thrombocythemia (ET), and primary myelofibrosis. In MPNs, the bone marrow produces excess platelets, red blood cells, and/or white blood cells. As these extra cells accumulate, the neoplasms become more advanced and can cause noticeable symptoms that impair quality of life.
To learn more about this issue, myMPNteam spoke to Dr. Andrew Kuykendall, a physician at the Moffitt Cancer Center in Tampa, Florida, about dealing with numbness and tingling caused by MPNs. Dr. Kuykendall is a clinical researcher who focuses on developing novel treatments for MPNs. He is an active member of the Myeloproliferative Neoplasms Research Consortium.
The MPN Landmark Survey, which analyzed results from more than 800 people living with MPNs, found that numbness and tingling in the hands and feet were common symptoms in people with the three most common kinds of MPNs.
The survey found that the symptoms of MPNs “have a significant, negative impact on daily activities and quality of life.” The study results also indicated that people with these symptoms may experience stress and anxiety, and can face financial hardship if symptoms become severe enough to interfere with quality of life.
The parts of the body most frequently affected by MPN-related paresthesia are the extremities, such as hands and feet, Dr. Kuykendall said. While numbness is a common feature of all three forms of MPNs, it is most frequently associated with ET, he noted.
“Paresthesias are a kind of numbness and tingling sensation, typically occurring in the fingers and the toes,” Dr. Kuykendall said. “A lot of times, this has to do with platelet and blood vessel interactions that occur with essential thrombocythemia.”
Numbness and tingling in MPNs can be caused by a variety of factors, but in ET, the development of blood clots in the small vessels of the hands and feet can specifically contribute to paresthesia. However, the underlying disease mechanisms that prompt the neurological symptoms in ET are not yet fully understood. Clotting can also be a factor in paresthesia experienced by people living with PV.
In myelofibrosis, the numbness and tingling — known as peripheral neuropathy — can be a side effect of treatment. Both Thalomid (Thalidomide) and Revlimid (Lenalidomide), medications used to treat myelofibrosis, can cause this symptom, especially at higher doses.
People living with numbness and tingling from MPNs may want to know if there are any changes they can make in their day-to-day lives to help manage their symptoms. The good news is that simple changes to diet and exercise can make a significant difference.
Research indicates that some exercises can improve outcomes in people feeling the effects of peripheral neuropathy. Four types of exercise are generally recommended:
In addition to moderate exercise, people experiencing tingling and numbness from MPNs can make dietary changes that may also provide benefits. A diet consisting of fish, fresh produce, nuts, and whole grains can help people maintain a healthy weight, which may contribute to reducing peripheral neuropathy symptoms.
In addition to a healthy diet, people with numbness and tingling from MPNs should limit alcohol, which can have a negative effect on nerve tissue.
Some symptoms of MPNs can be addressed without medication, especially among younger people, Dr. Kuykendall said. They may benefit more from watchful waiting than they would from treatment with medication.
“We are focusing more on headaches and paresthesias and trying to see what types of interventions could potentially help,” he said. “Otherwise, if patients are feeling well and are at low risk for thrombosis [clotting], we would love for them to not have to be on any medications and be living a relatively normal life.”
Dr. Kuykendall added that symptoms such as numbness and tingling could be addressed with remedies as simple as low-dose aspirin. It does not work all the time, but it could bring relief in some cases, he noted.
"High platelet counts sometimes lead to more of these microvascular [small blood vessel] symptoms, and luckily, many of these can be improved with just baby aspirin," he said. "Oftentimes, these are aspirin-responsive symptoms, but they tend to occur more commonly in ET than they do in PV."
Even though these symptoms can sometimes be addressed with a simple over-the-counter (OTC) purchase, Dr. Kuykendall still strongly encourages people with MPNs to see a doctor.
“I would advise everyone who has an MPN to at least one time go to a specialty center and see an MPN specialist,” he said.
Doing so would address the symptoms and overall condition, and would also provide people with peace of mind. “These are symptoms that are sometimes challenging for patients to understand,” he said. “When they find out they are disease-related, I think that can be reassuring, or at least validating.”
By joining myMPNteam, the social network for people living with myeloproliferative neoplasms, you gain a support group of nearly 800 people who know what it’s like living with these rare blood cancers. Members come together to ask questions, give advice, and share their stories with others who understand life with MPNs.
Have you experienced MPN-related numbness, tingling, or burning sensations? Have you made any changes that improve your symptoms? Share your thoughts and experiences in a comment below, or start a conversation by posting on your myMPNteam Activities page.