I fired my previous dr. Found new one at Ochsner in New Orleans. Seems knowledgeable. He was nonplussed that previous doc did not order spleen ultrasound or an EPO level. The ultrasound revealed an anechoic cyst of 1.8 centimeters. I have read that cysts of the spleen are rare. My EPO is. 5.5 on a scale of 2.6-18.5. I fear that the cyst is due to a clot. I have not heard from my new Dr on these results, yet. I am also seeing a pulmonologist on August. I have shortness of breath that I have had for 5 years. I saw a cardiologist who did tests and a cath and said it was not my heart. My new MPN Dr is concerned that no one ever sent me to a pulmonologist. He wants to make sure that I am not throwing little clots to my lungs and that it is not pulmonary hypertension. He also showed me a result from my previous healthcare facility where in 2016 a Dr that I saw tested me for JAK2. The result was positive and I was NEVER informed! I was floored! Still am. I feel so let down by the medical community. And myself. I should have been a better advocate for myself!
Thank you all for your ear and support! Be your own best advocate! ❤️
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Wewo01
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wow that's tough, having the diagnosis without being told. How can that happen?!
I hope you are doing fine nevertheless, you have a lot to compute now.
I didn't experience anything similar to you, but proceed step-by-step, don't try to get all done at the same time. Find a local support group, or something online. I found one doing regular online meetings during the pandemic.
Having other people with the same problems helps a great deal.
I spent a lot of time doing research on what's going on in clinical trials etc. - and there is a lot.
In general I can tell you with an ET you can live a normal life; take care of yourself, find a doc YOU(!!) are happy with, be open, but don't worry too much.
Sounds as if this doctor is on the ball! I too have a cyst on my spleen. Found when I had my spleen scanned for ET diagnosis. Both my consultant and GP said it’s nothing and .. wait for it… quite common.
It sounds like you are quite fortunate to have found a doc who knows how to provide care for MPNs. A scan of the spleen is standard care for a MPN. It was quite negligent of the previous provider to not do one. You were wise to fire that doc. Given your symptoms, a scan of the lungs and other organs is most certainly in order. I am glad to hear the new doc is ensuring that happens.
FYI - I have lesions on my lungs, liver, kidneys, and spleen. The lung nodule is benign, but we do not know exactly what the nodule is. The lesions on my liver and spleen are probable hemangiomas (I have lots of those on my skin). I also have kidney cysts, which are not uncommon. Fortunately all of the above appears to be benign.
I have also been checked for pulmonary hypertension as there is an abnormality in my ascending pulmonary artery. More good fortune as there is no evidence of pulmonary hypertension.
I must say I am truly appalled that you had a JAK2 positive finding and the doctor never told you. That is a level of negligence that should be considered malpractice. At a minimum, I would file a formal complaint with the State Medical Board. Doctors should always be held accountable when they make mistakes.
What you describe is a case in point. Assertive patients receive higher quality care. Passive patients do not. It is always up to the patient to take charge of their care and ensure the quality of service delivery.
All the best my friend. Please do let us know how you get on.
Thank you, Hunter! Your replies are always thorough and welcome! With your knowledge, is my EPO level considered normal or low normal at 5.5? I am glad to hear that your nodules are benign. Take Care!
With a reference range of 2.6 - 18.5 I do believe that an EPO level of 5.5 would be considered normal. It is at the lower end of the reference range, which is likely OK. EPO levels vary based on your body's need for oxygen. Varying levels of hypoxia lead to the kidneys producing varying levels of EPO (erythropoietin), which is a ligand that binds with receptors on the cells that produce RBCs. When we have the JAK2 mutation, our cells will produce RBCs without requiring EPO to be present. That is why docs look at EPO levels and RBCs when assessing for PV.
I have been fortunate in that all of my lesions have been benign, including the brain tumor and the various other neoplasms. Since I also have the NF1 mutation, I am more prone to a variety of neoplasms. JAK2 + NF1 = more odd things growing. So it goes. Providing I keep living a high quality life it is all good. I really don't sweat it once I know what something is. I deal with it only when I have to. Otherwise Hakuna Matata.
I think he wanted to see the EPO to help him decide if I was ET or PV.He said if EPO was low it would be PV and if it was high it would be ET. Unless I misunderstood him.
The short version is that something like that is true. However, do note that my most recent EPO is 7.8 and I do have PV. See attached criteria. mpnconnect.com/pdf/who-diag...
I, too, like Hunter, am appalled that the previous doctor didn’t mention or follow through on your Jak2 finding. That is so disturbing! I’ so glad you found someone competent. As for the shortness of breath, I remember going to a cardiologist years ago because no one told me it could be a symptom of ET. My heart was fine. I’ve struggled with shortness of breath for years and recently I was diagnosed with sleep apnea. I use a CPAP machine. Although it’s been really a huge adjustment, I feel it’s helped me a little bit with my shortness of breath during the day. Also, I had a blood clot in my spleen back in 2010. The pain was so excruciating. I thought I was having a heart attack. I was hospitalized for 3 days. There are many things we have to deal with and now I have post ET MF, but I found an mpn specialist in 2018, and she has been wonderful. I’m glad you’re finally being your own advocate. It took me several years to find the courage to change doctors.
Thanks so much for the reply! As Hunter suggested, I am going to file a complaint with the state medical board. I have read that shortness of breath is a symptom of MPN’s. I am not sure if my new Dr feels that way or not. But he did say that I needed to see a pulmonologist which am.
It’s good that your doctor is being proactive. My hematologist was also the one who recommended that I see a pulmonologist. That’s when they diagnosed my sleep apnea. My test showed I stopped breathing at night an average of 19 times per hour, and that was causing even more fatigue in the daytime. She was also the one that recommended I get an MRI when I had horrible pain in my back and leg a couple months ago and I couldn’t walk for nine days. I had had an x-ray and a CAT scan and it didn’t show anything. But the MRI showed an inverted herniated disc. She wants to make sure I’m as healthy as possible just in case she determines that it’s time for my SCT.
I had a sleep test but it was 10 years ago. They did not find apnea but did diagnose Restless Leg Syndrome. It may be time to be checked for apnea. Herniated discs can certainly bring you to a halt! I have them in my neck and low back. When the low back happened I could not even get out of bed on my own! It was awful! I am hoping that you find continued relief!
I'm sorry about the splenic cyst. My MPN was missed for seven years. My high platelets and wonky bloods counts were tagged in 2013 for further inspection, but my former Primary Care Physician didn't follow up. I recently learned this when I requested my records. Lots of time and tests were wasted.
I am from New Orleans. Oschner is a fantastic hospital system. Glad you are getting better care.
Hi Lena! I am just across the border in Waveland, MS. I am so glad I am now in the care of Ochsner! There seems to be a higher level of professionalism and competence across the board! The cancer center is amazing! Sorry to hear that you went through so much. Good grief! I just cannot comprehend the disconnect that happened to you and me. It’s unforgivable! Thanks for reaching out to me. Take Care!
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