I have ET JAK2 and have had it for many years. Last year I started to feel exhausted and I couldn't quite explain the degree of my feelings to my GP. Over Christmas my GPs surgery was closed so I visited a clinic that specialises in bone repairs. This stranger to me asked if he could give me a heart Xray and CT Scan. He diagnosed me with a long standing pneumonia, he thought 9 months +, he said that it had scared my lungs. My white blood count was normal and when I told my GP that I was very pale (white) he told me to get some sun. He was just frustrated and despite telling him I had spent nearly a year in bed other than when I prepared meals, he didn't believe me. Has this happened to anyone else? I am still far from recovery. I lost use of my muscles. Am I at risk of having this happening again?
Hi Anna. I had a similar situation whilst in. Canada about 9 years ago. Felt so. Dry I'll and kept going to my GP and she wanted me to have antidepressants. No tests were ever carried out but I have felt ill ever since I,e. Diagnosed with ET in 2014. And CFS the following years. Loads of chest infections and UTIs. Still feel awful as I have been "so low" am now on antidepressants to which I've had the most horrendous reaction. It's too late now to investigate but it makes you wonder exactly what it was.Can't say you'won' have it again but I'm pretty sure that's where it all started. Try not to be too concerned and I wish you well.
You did not mention what meds you are taking, if any, for the ET. Immunosuppression is an inherent risk of many forms of chemotherapy. Not sure whether that is relevant for you, but worth looking into if you are on meds. It is very common for GPs (an even hematologists) to lack knowledge about rare disorders like MPNs and likewise a lack of knowledge about their treatment and adverse effects of the meds used. Unfortunately, having doctors blow you off when they don't understand what is going on is something too many of us experience. I have learned the hard way that educated and assertive patients receive better quality care. Passive patients do not. Hope you get this all figured out soonest. All the best.
Hydrea, 500 daily but I have not had a platelet count within the normal range since 2002 which is my last tests results I have at home. Thank you for your response.
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