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Real members of myMPNteam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.
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Does Anyone Else Have Any Pain Or Problems With Your Kidneys? Mine Are Sometimes Giving Me Some Dull Pain And I Feel Nauseous Sometimes.

Does Anyone Else Have Any Pain Or Problems With Your Kidneys? Mine Are Sometimes Giving Me Some Dull Pain And I Feel Nauseous Sometimes.

Wondering if there is anything I can do to reduce kidney issues. Should I avoid eating anything? Drink more water? Don't meet with my doctor for 4 more months. Will see if they can answer my questions but thought you all might have similar experiences. I found online kidney dysfunction happens frequently with MPNs but I had not heard about it. The research is all from 2020 and 2021 so new issue for researchers from what I can tell.

Numbing Of Face????

Numbing Of Face????

My husband has been having numbing on his face occasionally. Anyone else? Dr doesn't think it's related to his PV but I'm not so
sure. Test are being done and results aren't back yet.

A myMPNteam Member said:

Do you have PV? How has your dr responded to this?

posted 14 days ago

Some Feedback Please...

Some Feedback Please...

My docs have asked a favor. I've posted on this forum that my doc gave me a very low dose of Ritalin to help with my brain fog, and it worked really well. In addition to the brain fog relief, it also eliminated that horrible bone pain in my legs. They would like to know if anyone else has tried Ritalin (Methylphenidate) and if they had similar results. They are curious if this is an "off label" bonus that other MPN patients may benefit from. I'm not passing any names on to them, just comments… read more

A myMPNteam Member said:

Mental stress of MPN is worst part of it for me so far!!! I know I am lucky and try to appreciate that every day!

posted 16 days ago

When You Went To An MPN Specialist For A Second Opinion,what Was The One Important Question You Wanted To Make Sure You Asked?

When You Went To An MPN Specialist For A Second Opinion,what Was The One Important Question You Wanted To Make Sure You Asked?

A myMPNteam Member said:

Lorraine - I agree that there are probably many more people out there who are unaware they have an MPN until a they receive a sudden/surprise diagnosis related to something else. Hope you are able to… read more

posted 15 days ago

No Antibodies COVID Vaccine ...med Change? Help?

No Antibodies COVID Vaccine ...med Change? Help?

MY COVID antibodies were negative
MY IMPORTANT QUESTION IS:

Since we know Jakafi interferes with vaccines and it has been suggested to change medication. I don't do well with other meds but am willing to go back on Hydroxyurea for a few months if this will help me produce antibodies.

Is there any data on Patients on Jakafi having antibodies after the 3rd shot? What is suggested?
It has been 8 months since I had the vaccine. I had a bad reaction and was in hospital due to vaccine.

If I go… read more

A myMPNteam Member said:

Are you seeing a hematologist?

posted 6 days ago

Will Long Term Exposure To RF Radiation Or Benzene And Toluene Cause A JAK2 Mutation?

Will Long Term Exposure To RF Radiation Or Benzene And Toluene Cause A JAK2 Mutation?

I'm a veteran of 20 plus years in the US Armed Forces. During my career I was exposed to RF Radiation and toxic chemicals. Because of my MOS as an avionics technician I frequently repaired high powered radios, radar, navigation systems, electrical wiring, and was exposed to toxic chemicals such as benzene and toluene. In 2019, I had a stroke and was diagnosed with Myeloproliferative JAK2 (ET) Essential Thrombocytosis for producing too many red blood cells and platelets. I was placed on… read more

A myMPNteam Member said:

I was asked by the hematologist about the benzene and toluene after my diagnosis. I said I had no knowledge of being exposed to either of those. The only exposure to chemicals I could remember were… read more

posted 24 days ago

Does Anyone Else Have Grave’s Disease?

Does Anyone Else Have Grave’s Disease?

Did you know Pegasys and Graves disease are linked. In rare cases, Pegasys can cause Graves. Which means you have to constantly pull the TSH. Something your oncologist probably isn’t watching. Tell them to pull it! Do you have your ferritin pulled as well? Anemia can be a cause of MPN’s. We have to watch our iron as it’s a great indicator of autoimmune diseases…like cancer.

A myMPNteam Member said:

I’m not really sure because all my life I have been trying to donate blood but when the Red Cross would test me at the blood drive, they said that I was a little anemic so I went to my PCP and asked… read more

posted 12 days ago

Third Dose Covid Vaccine

Third Dose Covid Vaccine

Has anyone who is on Hydrea been advised to get a third full dose as opposed to booster of the covid vaccine? My hemotologist advised a third dose since I take Hydrea,but my pharmacist said the CDC is not considering Hydrea an immunosuppressive drug and thus a booster is all I need

A myMPNteam Member said:

I've just been to an MPN specialist who told me the Moderna booster is all I need. So far I've been told by a hematologist to get third full dose, CVS pharmacist said booster and MPN specialist said… read more

posted 11 days ago

Specific Foods To Eat

Specific Foods To Eat

I wanted to check with the group to see if anyone had suggestions on the type of food to eat to combat the PV symptoms. I know what foods not to eat, however am looking for any diet recommendations.

Thank you!

A myMPNteam Member said:

😁

posted 21 days ago
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