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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.

What Is A Common Misconception About People With MPN?

What Is A Common Misconception About People With MPN?

posted November 4
A myMPNteam Member

It Is Not a death sentence. Educate yourself andplease do n ot feel this is the end. Life is a death sentence, we know when we are born we are going to die some day. Unfortnately some sooner then pthers. They told me in the very beginning oh maybe 3-5 years.(That was 11 years agoo) Heck yes I was shook up, But then I got to work to find out all I could about the Illness. It is Ok to get 2nd Opinions It is ok to hire a new Dr, find one that best suits your personality. Ask Lots of questions and if you do not like the answer, ask some one else. You have to believe in your self. Yes we have lots of bumps on the road, but keep moving if you quite ir will take over you. You are the driver of your bus you chose who is along for the ride. God Bless andGood Luck.

posted November 4
A myMPNteam Member

Yes, no one knows about this disease. It is so frustrating. Even my own husband doesn’t want to believe that it is some kind of cancer. But at least thanks god it will not kill us. We all have to take one day at a time. I find it by keeping busy and stay active, I manage the symptoms better.

posted November 5
A myMPNteam Member

My biggest problem is people look at me and think nothing wrong with her she looks just fine I try to explain to him that it's rare and that I look great on the outside but I'm lousy on the inside most of them just give you a little tiny smile and say well good luck

posted November 20
A myMPNteam Member

Is Schwannomatosis NF3 a type of 'cancer' ? I also have Juvenile Myoclonic Epilepsy, which 'started' around the same time when I was 14 in 1970. I also now since June 2022 have Prostate Cancer.

posted November 12
A myMPNteam Member

I have Schwannomatosis NF3 and even some of the doctors scratch their heads , 'never heard of it!' finally diagnosed in 2017, symptoms started in 1970, but it interacts with so many other things medications and medical conditions. Even some medical students 'grill' me "What are your...." a real lab rat! I have my own personal specialist, but numerous times I feel it is the blind leading the blind, no one to compare symptoms etc.!

posted November 5

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