Hello, my name is Elizabeth, and at age 40 I was diagnosed with essential thrombocytosis (ET). I’ve been asked by Patient Power to guest post on my ET frustrations. We hope this will help you deal with frustrations that you may also be feeling, or help you better understand something that someone you love is dealing with.

Frustrations with ET, for me, have been in a lot of areas. What I feel is the most frustrating is the fact that ET, and MPNs (myeloproliferative neoplasms) in general, aren’t understood very well, even by the experts. On my illness journey, this has been the hardest fact to deal with and the cause of immense stress.

Along my route to diagnosis, my symptoms started with fatigue, bruising, achiness, intense migraines and loss of sight. They’ve gone on to also include numbness or tingling of my extremities (including face and mouth), “tiltyness” like I’ve just gotten off a boat, loss of memory, foggy thinking, heart pains and palpitations, chills, night sweats, dizziness, upper back myalgia, face and neck flushing, nausea, diarrhea, and daily bouts of fatigue that are so intense it feels like I’m a rapidly deflating balloon and that every cell in my body is completely empty of energy. At age 40, I feel 100. I am just a shell of who I was.

At first, I was evaluated by my family doctor, my optometrist, a local hematologist, an on-call hospital hematologist, multiple ER interns and doctors, and a specialist in MPNs. All had varying opinions. Continuing on, I was evaluated by two more local hematologists, additional ER doctors, a second expert in MPNs, new family doctors, a neurologist, a cardiologist, a psychologist, additional local hematologists, and a third specialist in MPNs. Over two years (!), I saw 27 doctors, from all across the U.S., including heads of departments, world-renowned experts and everyone in between. I’ve also been tested for just about everything I think they could think of, and only two have agreed on my diagnosis and course of treatment.

From these doctors, I was told I had depression, told I didn’t have depression, told that I just needed to wear sunglasses, rushed to the hospital to immediately start on hydroxyurea (Hydrea, an oral chemotherapy) to lower my platelet numbers, told to stop the hydroxyurea, told I never should have been on the hydroxyurea, told that high platelets would cause a stroke, told that platelets (high or low) didn’t correlate with an increase in stroke risk, told that I was fine, told that I was exaggerating my symptoms, told that I “just needed fluoxetine (Prozac),” underwent multiple BMBs (bone marrow biopsies), told that I didn’t need to have had bone marrow biopsies, told that I had cancer, told that I didn’t have cancer, and told that I didn’t have “real” cancer, asked if “I was sure I wasn’t pregnant,” told to start on anagrelide (Agrylin), told not to try anagrelide, told to start a ruxolitinib (Jakafi) trial, told a Jakafi trial would harm me, told that I had essential thrombocytosis, told that I had essential thrombocythemia, told that I had essential thrombocytopenia, told that I had JAK2-positive ET, told that I had had a thrombotic event (TIA, transient ischemic attack), told that I hadn’t had a major “enough” thrombotic event, told that I had ET and something else undiagnosed, told that my symptoms correlated with ET, told my symptoms weren’t those of someone with ET, told that since I was 40 my ET was not high risk, told that even though I was 40 my ET was high risk

Perhaps you can begin to see my frustration?

This variety of doctors’ opinions has a ripple effect. They are echoed in journals, on websites, in magazines, through patient forums, through social media, from patient to patient and so on. I ask myself and others, “How can this be?” Why is there no consensus? Why is there no overriding governing body that takes everyone’s data and figures out the best path of treatment, and then passes that down for everyone to work from? How can a patient know what to do, who to trust, what to take, when all the “professionals” can’t even agree?

The change on a life from healthy to not, regardless of which disease you’re battling, in and of itself is overwhelming, but to add this on top is too much! It’s emotionally draining, financially draining, physically draining, and it doesn’t help any of us! We, as patients, need help. We are at our most vulnerable, trusting, lowest of energy, lowest of spirits. We need consensus. We need patience, and kindness, and we need to believe that we’re being cared for the best way known. I thought naively that this was what would happen. “You don’t feel well, you go to the doctor, they know what to do, you get better.” But that’s not the case. For now, unfortunately, this flaw, this frustration in the ET community hasn’t been fixed. I wanted you to know that if you’re frustrated, too, by a journey like mine, you’re not alone.

I also wanted you to know that on my ET journey I’ve gone from naïve, quiet and trusting, to questioning, bold and empowered, and I encourage you to do the same! Until there is a consensus, you are your best advocate. Listen to your heart. Believe in yourself. If something doesn’t feel right, or sound right, take a time out, change direction. Learn all you can about your illness. Or if you can’t pin down a definite diagnosis, learn about your symptoms and what could be their cause. Research, journal, question and think outside the box. Share what works for you and what doesn’t. Be honest and helpful to others. And most importantly, be thankful. Be thankful for the life you do have. Be thankful for the times you do feel good and for what does work right. Be thankful for the ET friends you’ve made. Be thankful that every moment of every day is not a frustration J Thank you for joining me on this first post. Next time, we’ll tackle “Loss of Support.” Until then, I hope this has been a help to you or someone you love.

Thinking good thoughts,

Elizabeth Gross, author of “Dream Accomplished: A Story of Cancer, A Mother’s Love & Taylor Swift”