Hi everyone,
I’ve been a member of this community for a while, and I’m so grateful for the support and shared experiences here. I’m writing because I’m feeling incredibly frustrated and overwhelmed with my ongoing symptoms, a lack of answers, and the challenges I’ve faced in managing my diagnosis of Essential Thrombosis (ET).
I was diagnosed with ET six years ago after routine blood work revealed an elevated platelet count (450), and a subsequent bone marrow biopsy confirmed the JAK2 mutation. While my platelet count is now in the normal range (currently 300), I believe the problem lies not with the number of platelets but with their function. I suspect my platelets are damaging my veins, which could be causing many of my symptoms.
Symptoms I’m Struggling With:
1. Skin Issues: Painful, itchy, and burning rashes frequently appear on the upper parts of my arms (between the elbows and shoulders). These occur mostly in the evenings and sometimes in the mornings. My hematologist has dismissed them as eczema or pus and prescribed over-the-counter treatments, which haven’t helped at all in six years.
2. Tingling Sensations: I wake up every morning with tingling in my right fingertips, and it takes hours to subside.
3. Heel Fissures: I’ve developed deep, painful cracks in my heels that make walking very difficult.
4. Breathlessness, Anxiety, and High Blood Pressure: I often struggle with shortness of breath, extreme anxiety, and high blood pressure spikes.
The Bigger Picture:
In addition to ET, I’ve been dealing with a combination of sleep apnea, mild cognitive disorder, extreme anxiety, depression, and ADHD. These conditions are comorbid and, from my research, seem to be linked to ET or other microvascular issues like erythromelalgia. The stress from these overlapping conditions has been unbearable and, I believe, has made my symptoms, particularly the erythromelalgia, significantly worse.
I had to take a six-month medical leave from work due to these combined challenges. When I returned, I struggled to perform my job due to the cognitive and physical toll these conditions had taken on me, and I was ultimately fired. Since then, I’ve been fighting for long-term disability benefits from the third-party vendor that managed my medical leave. My claim was denied, and I’ve been battling this decision for over a year. The stress of this process has been overwhelming and feels like it’s killing me.
My Concerns About My Care:
My hematologist-oncologist, who I’ve been seeing for six years, has dismissed many of my symptoms and seems unfamiliar with ET’s secondary complications, like erythromelalgia. I even asked her directly about it, and she admitted she didn’t know much and suggested I see a specialist. I find this shocking, as I thought hematologist-oncologists were specialists in blood disorders like ET.
During my visits, she’s spent very little time addressing my concerns (often just telling me my counts look fine). After six years of this, I feel let down and desperate for answers.
Seeking Advice:
Has anyone experienced similar secondary symptoms with ET, such as rashes, tingling, or breathlessness? Have you dealt with comorbid conditions like cognitive issues, anxiety, or depression alongside ET? How have you found knowledgeable specialists or received support for long-term disability claims?
I feel like my symptoms and struggles are being dismissed, and I’m in so much pain without answers. Any advice, shared experiences, or recommendations would mean the world to me.
Thank you so much for taking the time to read this and for any guidance you can provide. This community has been such a lifeline for so many of us, and I’m deeply grateful for all of you.
Thank you!
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