Thank you for sharing! I’ve been busting my butt trying to find peoples ET stories and it’s rare so there’s not much. Glad I found your channel, I’m 30 and was recently diagnosed with ET
Thank you for sharing your story. I am in my 50's and was diagnosed earlier this year. I have ET with a CAL-R mutation. My Platelets are running around 950 -980 for now. My first doctor tried to get me to start Hydroxyurea, but my gut told me not to start it and get a second opinion. I am so glad I trusted my gut. The new doctor specializes in MPN's. and said we are not there yet to have to start taking those meds. I am only taking a low dose daily aspirin for now. So Glad I found this and can connect with other people like me.
Hi.. I’m 65 diagnosed 17 years back and choosing same route as you. Platelets also run 680- 950. My Mom had this as well. She did Hydrea. .. for now I’m doing baby aspirin and no hydrea. Rare- genetic/ chronic. I did have a blood clot treated with heparin last year. Have high blood pressure medicine. I have had a normal life working full time till turned 65.
Mel, I'd love to see you post again. I hope your doing well and thank you for bringing all of your followers together. We, like you have been searching for others to help us through our journey. I hope you're doing well and would love to hear from you again! 🙋♀️
I’ve had known MPN for 4 years now. I was 39 y/o at the time. I looked everywhere to see if anyone else has this. Mine is CalR type 1. Thank you for doing this video. It will be so helpful to so many.
Hi Mel. I hope you're finding out that life can be normal with ET. I was diagnosed with ET about 15 years ago. I'm now 68 and still doing fine. Stay on top of your platelet count with blood tests every three months at the longest. I assume you're taking Hydroxyurea and aspirin, keep that up. There's no reason why you won't have a long, wonderful and fulfilled life. Take care my ET friend. :)
Don't be scared honey, I have had it for 10 years and it has very much stayed under control. I assume you have a hematologist and just do what they say to do. Get you checkups when your supposed to and take your meds like your supposed to and it will be fine. Normally you live a regular life span. Pray and I pray Jesus will heal you. God Bless
Hello. I am 41. I was diagnosed with ET last 2020 after bone marrow biopsy confirmed jak 2 positive. I am on aspirin 81mg daily. My hematologist did not prescribe me hydroxuria because he said I’m still young for it. Lately having fatigue, in frequent visits to e.r. due to chest pain, shortness of breath and palpitations. Doctors advised me to see a psych doctor due to my anxiety. Never told any family member about it. Nice to know and thank you for sharing your experiences.
I’m 42 years old but my doctor gave it to along with aspirin , I refused im under homeopathy treatment hoping it works , and so far I’m feeling less pain on my bones …
Thank you for bravely sharing your story, Mel. I have had ET since June 2011 where my initial platelet count was over 950. I take Hydrea daily (2 x 500gm), and for me the side effects are dry flaky skin. I live in Brisbane Australia with my wife, Mim, and a dog, Napoleon. Essential Thrombocythemia needs to be monitored regularly, and I normally do the blood test twice a year with the goal of having the platelet count under 400. I have a strong faith in God and will be praying for you and your husband and family. It is a shock to have the diagnosis, especially at your age. I’m 65 this year, but I may have had ET for years before being diagnosed, so don’t be too hard on yourself. I’m also a type 2 diabetic, and after a number of slack years (I let myself go a bit), I’m getting my HBA1C down to 5.7, which is a good number. I recommend having a good doctor you can trust and talk with. Especially someone who is able to help you understand what is happening.
The thing with hydra … it lowers more our immune system … even with the disease that we are suffering from our immune is low .. so far I’m starting a homeopathy treatment I order it from India … so far at least I have very less pain in my bone …
@@am30wish Bone pain, when I was diagnosed with Pare Thyroid tumor, this explained much. Got the throat cut, removed that tumor, threw the calcium at the issue, to hopefully reverse the damage for years a doctor did NOTHING, until I was curious as to what causes HIGH calcium and low Vit. D and that whole mess (YES, I fired that doctor) and had to take my medical issues into my own hands! PTH test and results verified that horror of my reality. So, whether that caused this high red blood cell issue, I find I'm curious about connecting the dots, what came first, what did what, fix the root cause and find the link(s) and fix this until that goes wacky and array? Rolling my eyes. And YES, now the eyes are being affected and the damned floaters are being obnoxious menaces, for sight issues! UGH...(insert scream here). I'm waiting for a therapeutic order for phlebotomy (which is like pulling teeth) to get. Dentist, is like pulling teeth to get work done, even after it's been paid for in full prior to and forgotten, hoping you die, would they refund the money, being they haven't done the work? Frustrations on SO many fronts, I want to have a hissy fit and slap them all for their lack of care! First do NO Harm! Hurry up and wait, is what I've learned, to have patience, in being a patient.
Hi Mel, I was diagnosed in February 2022, Im 41. Like you at a loss with all of this information being thrown at me. Im ET w/ anemic and splenomegaly and a platelet count of 1.6M. being treated with hydroxyurea. My significant other turned out to be not that significant cuz he couldn't deal and left, or I should say, made me leave. Im now single, homeless and completely lost. Your not alone and neither am I. He left me his 200 lb dog, Bull Mastiff, Great Dane, named Tank. (not pictured above). Thanks for listening. Literally, I have no one to talk to about this.
Hi, my wife (35) was diagnosed with ET last week and has a biopsy scheduled for next week. The waiting and worrying leading up to this biopsy is nerve racking for both of us. It makes it slightly less scary to know others are also dealing with this. Have a great day Mel.
I’ve had ET since age 32 and I’m now 58. Only started Hydrea about 13 years ago when I had a toe wound that couldn’t heal. I’m only taking 500 mg of Hydrea instead of 1500mg per prescription with a baby aspirin every other day. My platelet count is 800+ with this dosage and besides lacking energy and gastritis caused by the aspirin, I’m otherwise living a normal life. Hope my experience with ET can alleviate fear about this condition and can give some hope & comfort for those who have it. Lots of love and God bless.
Thank you for your comment. I’m 32 and I’ve just been diagnosed. Did you started taking a baby aspirin daily from you were 32? Do you travel or go on long flights?
Did you have children with your diagnosis? I just found out I have ET bc of fertility treatment blood tests and I’m scared I won’t ever be able to have a baby
Thank you for the video just found it today. My husband was diagnosed with ET 4 weeks ago. I like to know as much information as i can! As you said, there's not a lot out there. Stay strong, and you have done an amazing job putting your thoughts and feelings on here. I am so grateful 🙏
I’ve been diagnosed with JAK2 and positive for MPN I’m 57 and my wife and I are both very concerned and scared. We can’t find much understandable information. So hi and you’re not alone.
im 42 years old and i have been diagnosed with the same thing,i didn't take any drugs so far i was suffering from the symptoms as they are so painful,as i was searching about the sickness i found at that homeopathy can lower the platelets count ... i started it few days ago believe even pain in my bones started to get less...
I was diagnosed in late 2020, JAK2+ (at 19 years old) At first I was very scared about what it meant but now I take comfort in the fact that the chance of progression to other cancers is very small and there are many treatments available to keep it in check. Coming to terms with the symptoms and health management is the difficult part.
@@heer415 I am 21 now, diagnosed at 19. A blood test can confirm a JAK2 mutation (or any of the other MPN mutations) but a bone marrow biopsy can tell you how severe the MPN is and some other information about how your bone marrow is working.
@@heer415 I am mostly good 👍 but I get bad fatigue and headaches. My platelet count is 730, and I take 1 aspirin a day to prevent blood clots. I won't start the stronger medicine until my platelets are at least over 1000.
Okay, I don't know where to start but as people say at the beginning. This may get long. I found your video so I wanted to tell you a bit of my journey with ET. I was diagnosed in 1978 at the age of 30. I'm a woman with many health concerns but ET has not been a major problem. When I was diagnosed there was very little information available for the general public. I had a bone marrow biopsy and was treated with chemo. It helped settle things down for a while. I have been on 81mg. Aspirin and Hydroxyurea off and on since then. So far it has only impacted my life in ways I have managed to deal with. I have had surgeries with few problems. I am careful to make sure that all my health care providers know I have it. When I was first diagnosed I would have to explain to them what it was. Now not very much. When I was diagnosed my platelet count was over 2million. Every so often I quit talking Hydroxyurea and then the count skyrockets to 2million. I have never gotten down to the accepted count of under 450,000, but, I have managed to live life without the ET being my focus. Other than not being able to donate blood products or organs, I try not to let it interfere in living. I can't think of anything that I wanted to do that I couldn't because of it. I am the kind of person who when I want to do something I will make every effort to do it. I don't know if or when ET may progress to anything else but then, maybe something else will happen before that. Something that I have done is to make sure that I don't eat sugar and anything starchy. I have found I am sensitive to many foods. At this point in time my platelet count is usually between 560,000 and 540,000. It's not where my oncologist wants it but that's where my platelets are. I hope this information makes it easier for you to accept and get back to enjoying your life!!
Totally agree! I was diagnosed with ET 20 years ago when I was 16, and had no medication. 10 years later I did the biopsy and it was confirmed, started medication. I’ve been on and off with hydrea depending on how I eat, and my plate count. I the best thing for this is take one day at a time and go through life.
My sister was diagnosed with ET 2years ago she is 82 but is doing ok,still getting about with her friends and family and I support her all I can god bless ❤xxx
Hi I am 38 yrs old and I have recently been diagnosed with ET (CALR) mutation. My emotion is all over the place. I don't why it happened to me . I lived a disciplined life . Looking for someone to share the experience .I am so broken and depressed from inside. The fear of cancer and what it may lead to is always at the back of my mind. I see normal people friends and I break down.
Thank you for sharing your video. I was diagnosed with Essential Thrombocytosis in 2021 after a Jak2 bone marrow aspiration and biopsy was negative in 2010 with Secondary Thrombocytosis. 2021 I had another bone marrow aspiration and biopsy done. I was found to be Jak2 negative, MPL positive and CALR negative. This combination makes up 1-5% of all Essential Thrombocytosis diagnoses. On top of that percentage, I'm male and make up 1- 3% of the other small percentage. I was a Elementary School Physical Education teacher and was feeling weak. My platelets tested high in 2008. Numerous tests were done. I also found out that I have a Complex Seizure Disorder from my posterior frontal and left temporal lobes of my brain. I am seeing a specialist for 9 months. I've been prescribed an oral chemo capsule of Hydroxurea. My blood is tested every 3-4 weeks to see how my blood levels are. My chemo pill has been increased 7 times. I will be getting my stem cells tested, my HCL stem cell markers identified and entered into the National Registry for Bone Marrow and Stem Cells to begin finding me a suitable donor. My reticulum fibers in my bones are starting to increase in number and size. They will eventually form scar tissue in the bone marrow. I continue to live and love life while I listen to my body. Not worried about ifs and whens. Hang in there!
No 'expiration' date on the bottom of either foot! ;) Here for the long Journey! Not willing to poison myself with acids of chemo or radiation. Guess I'm a strange bird? Learning natural path of how the body works and when it is sick it is acidic, when it is Alkaline, it is well. Why add acids to be 'cured'? Belief systems are hard to wrap my mind around, when it is beyond barbaric to understand? I've had to cure CV with L-Lysine and pure red grape juice and baking soda in water, to find 3 days fixed what suffered for 3 straight months, even I was amazed that it went away in 3 days! Learning. Key. Search for answers!
I'm 76 and was diagnosed 13 months ago, ET with CALR Mutation. 10 months on hydroxyurea failed. Now on Busulfan.. Side effects are life changing. Welcome to the world of brain fog and fatigue. But some days are quite clear. Now refusing statins, don't want even more side effects. How do you take these meds and still have a life? My friends don't call much anymore and are slipping away, cancer scares them off. Daily life is defined by the changing levels of Chemo Brain (fog). Add Covid fear into the mix and its all a weird new reality of day to day life. Had Evusheld shots protecting against Covid available to people on Chemo. Melanious thanks for posting. Have subscribed and will watch for your next post. Hello to all you fellow travellers on this ET journey.
Thank you so much for doing this and filming this. I’m struggling with chronic health issues and really believe there is something related to my bone marrow and blood potentially cancer. Already diagnosed with chronic fatigue and fibromyalgia and autoimmune disorders that have not yet been confirmed. I recently also had a high platelet count along with low iron. And for the last several years have had so many different lab results and I had to review them myself and look up potential meanings for the things in the abnormal range and consistently the things that are off indicate lupus or blood and bone marrow cancer. Lupus has been ruled out despite having all the possible symptoms. The hardest thing to me is how much of struggle with energy and memory and cognitive issues and I have a high needs child to care for and can’t maintain the energy to seek out the help I need and advocate for myself or how frustrating it is because I also forget important things in appointments. I’ve made lists and had a doctor refuse to look at it. He decided by looking at me I was young and there was probably nothing wrong with me. I’ve felt with gaslighting and shame and what feels like an abusive relationship between me and health care providers for years. I’ve lost everything. My ability to work or even do some of the smallest things. My only hope is to get answers and turn to the specialist and doctors and I feel like I’m being let down. I also don’t want to find out I have some type of life threatening cancer only after it’s become so much worse that my odds of getting the most out of any available treatment will be diminished.
Hello everyone! My name is Adrian, I live in Romania and I was diagnosed with ET in 2021 one month before the pandemic, I was 32 years old then, I had investigations, bone marrow biopsy, hydrea and anagrelide treatments, (interferon alpha is not available and not subsidized by the state)... It's been 3 years since then, I haven't managed to get into normal range with these treatments, I will probably resume treatment with hydrea as soon as possible, it's a difficult period although it's been a while, and there are times when psychological support is essential, I'm thinking of making a community where we can get together to discuss and offer support to each other. We need to be serene, optimistic and live this life to the fullest no matter the circumstances! I wish you all good health and I am glad I found this video and could share these thoughts with you.
It is a long time sense I watched this , so I am surprised that I got something noted on my email. I tried 3 times to do the drugs and I had reaction to them. (both mental/emotional and physical. I am now 73 and I am still here. I made my choice to ride this through. On my own, I make every day my love for my body and all the changes which are from this blood dis- ease. and just be fully in the now, I am older than you and all I can say is to find your way with or without the medical treatment. i am do fine after I came to terms with all the points of view about this mutation and life and living. So no matter what you have or will choose through this life in your body, all I can say is embrace every moment and find peace and love for you and you amazing beautiful BODY!!!!😍💖🕉🕉🕉🕉☯
Hi, i respect your choice and wish you all the best! Can you please tell me how you're are doing, as my Mom was just diagnosed 3 days ago and the dr wants to start her on a low dose of hydroxyurea. She is 87 but extremely healthy and is non symptomatic.
I've had ET for at least 11 years probably longer. It was discovered during a routine blood test when I moved house and had to find a new surgery. At first we didn't know what was wrong and I had all kinds of tests. Camera put down my throat and bone marrow samples taken from my back. It was the bone marrow sample that was sent to Liverpool University that came back as positive ET. I have regular appointments with my haematologist to keep an eye on the platelet count. No two counts are the same by the way so we manage it with Hydroxycarbamide. Three tablets every day to keep the count down. Last count was 620 but when I was first diagnosed it was over 1600. Sorry I'm late finding this video I was just searching for something else that brought me here.
thank you for doing this i just found out day before yestderday i have MPN and i real couldn't find much like you siad a buch of doctor and other thing but not real much explining of what it is thank you for making this video it real helped me i have doing a lot trying not trying cry and taking it in but again thank you for making this video it made me feel a little better :)
I am sorry to hear you're navigating a diagnosis as well. It can be so desperately overwhelming at first, with so much information coming from so many different sources-- I'm glad I was able to offer even a little bit of comfort
Thank you for posting. I'm just looking into this as I've just found a friend has this. Reading about diet and what people can do to maximise the quality of outcome. Post some more videos and let us know how you're getting on 👍
I’m 82 and had it for the last three years. I’m in a new treatment now called vadaza. I have other complications with it. If you want to talk don’t hesitate.. God bless and keep you safe.
I am going to a Hematologist next week. So far my blood work shows that I have anemia,Thrombocytosis With a blood platelet count of 634k I am hoping that the cause is not cancer related but all I’ve been seeing online about it speaks of it in terms of being a precursor to an underlying serious condition eg. cancer, anemia, infection, injury. I have extreme pain in my left leg back ankle and the back of my thighs pulsate like palpitations every so often. I take iron daily and I am just starting to get back to working out after so long of being sedentary while working from home. This ankle has been hurting me since 2021 and It’s just starting to get worse. I’m going to a Podiatrist tomorrow to see if there is an injury. Hopefully that is the cause. I am sorry for everyone dealing with this and I pray for healing for each and every one of you. I may not know you but I love you and will be in the fight with all of you.
Thank you for the lovely message me too at the Begining I was suffering from anemia but the case was totally after that when my platelets didn’t go low … I made a mistake taking out 450ml blood my iron gets lower and platelet to 1M …. I was devastated I make things worse but I was following the doctors recommendation. And the thing he asked me to stop the iron and always have that believe that iron will help cure my symptoms at least … so far I didn’t start any médecine only i red a blog about homeopathy treatment from India and start feeling better at least … let’s prey and hope it will work
Thank you for sharing 🥰 i had Cluster headache for weeks. I gave up and got into Hospital after a lot of doctor appointments. They found Out that something with my blood is not right. February 2020 i got the diagnosis jak2 positive essential thrombocytemia, and i was 21 years old at that point. And then in August 2020 i had a bone marrow biopsy and they added early primary myelofibrosis. My med is acetylsalicylic acid, 100mg per day. After the diagnosis, that day my world collapsed. I have anxiety about it an struggle everyday with fatique, bone pain, circulatory disorders and itching. And also the mental point is hard. I am happy about Connecting, also wonder if the us is further in the therapy Stuff or with the science, because I am from germany
@@chanteme6099I’m not sure exactly what is your médecine ! But mine I have ordered it from India it’s natural remedy … the names are not easy to remember one element I remember is the phosphorus which I red before it’s good for high platelets… please keep in touch and let me know what you are taking ..
@@chanteme6099it’s the doctor who prescribed fro me the médecine I didn’t take it myself …as for today I had severe symptoms on the neck head and felt dizzy it’s almost one week I think the médecine starts working …😢
@@am30wish What the doctor prescribed me is a blood thinner. And the others are dietary supplements (grape seed extract, methylsulfonylmethane, lysine, vitamin c and others like magnesium and so on),on a natural basis, which unfortunately did not bring me any improvement in that area. Unfortunately, my doctor keeps saying that my symptoms can't come from it, which is really frustrating. I am so happy for you, its starts working. If you find out the Name, let me know.
I was 35 when I was diagnosed with Primary E.T. w/JAK2 mutation in 2017. I take HU and baby aspirin daily. I also was diagnosed in 2003 with Osteosarcoma, had my middle finger amputated and went thru a year of aggressive chemo. But, anywhos, you didnt say anything at all about your "E.T." diagnosis, your C.B.C numbers, your treatment plan(if any) etc. If you have Facebook, their is a private group(which im a member of) that has a couple thousand members currently enrolled. If you feel alone, trust me, youre not in terms of your diagnosis
Shame that two years later there is still nothing on UA-cam on personal lives of people with ET. I’m 34 and just got diagnosed. Completely by accident through my annual bloodwork. My WBC & platelets had been high for at least four years but in the absence of symptoms, my primary physician never got concerned or followed up. This year my doctor changed and my new doctor wanted to follow up with hematologist and within two weeks… here I am. It’s scary and feels lonely.
Hi Mel, I live in South Africa. The sun is always shining here and there is always the risk of developing skin cancer if you have a light skin. I developed a growth on the lower eye lid of my right eye. I do not know if it is cancer or just a benign growth but I went on a high nutrition diet for about two months and the growth have shrunk noticeably. I would like to share the diet with you. The soup Ingredients: - two handfuls of Chopped broccoli, one chopped onion (purple), two bags of green tea, two pinches of mixed herbs, two sticks of cut celery, Two handfuls of frozen and crushed spinach or kale, half a table spoon of crushed garlic, Three shakes of black pepper, seven shakes of turmeric, two tablespoons full of apple cider vinegar (with the mother), one bag of white onion powder soup for flavour, a hand full of cooked red speckled beans and a handful of cooked mince meat. Just add all the ingredients in a pot, add boiling water and switch the stove on high till the water boils. Then lower the heat until the water simmer, Let the soup simmer for an hour. The soup is now ready. I would only drink water in the morning. At 12h00 I would start eating the soup. There will be about two helpings that you can eat in the 12h00 to 18h00 time frame. I also ate a fruit salad every day in the 12h00 to 18h00 time frame. (Note: Apparently turmeric reduces the effect of some chemotherapy drugs and thus should not be taken during chemotherapy.) During the rest of the week I would also eat food that contains vitamin D like avocado’s, mushrooms, liver and eggs in the 12h00 to 18h00 time frame. It seems to be working for me, maybe it will also work for you. I pray to God the Father in the name of Jesus Christ that you will be healed. Amen. I would also like to share the following six videos with you about salvation and two videos about evolution: Evolution vs. God ua-cam.com/video/uc_W9VtzJ0A/v-deo.html DESTROYING Evolution In Under 3 Minutes ua-cam.com/video/sWecPwrQv2c/v-deo.html Watch the Holy Spirit Work in Her Heart (Very Moving) ua-cam.com/video/iBEoI2u6kII/v-deo.html Fearing The Lord, God’s Discipline & Sharing The Gospel ua-cam.com/video/dES5WW66Mro/v-deo.html A Clear Gospel Presentation by Pastor Steven Anderson - How to go to Heaven ua-cam.com/video/IXEeMWCxyrQ/v-deo.html The Plan of Salvation ua-cam.com/video/PmkhRMPvt_0/v-deo.html How to Get Saved ua-cam.com/video/ajWdkuvrT6s/v-deo.html The Truth About Hell (Selected Scriptures) ua-cam.com/video/AVzbh_dLq3s/v-deo.html Best regards Chris “For God so loved the world, that He gave His only begotten Son, that whosoever believeth in Him should not perish, but have everlasting life”. John 3:16 (King James Version Bible) Jesus Christ is the only begotten Son Of God the Father.
Hello 👋🏼. My son has ET or PV, but more seems like ET, since 2 years old, doctors identified by regular blood test. Now, he is almost 10. My language is Spanish. I try my best writing in English 😅. I just want to say hi and share our story with you. We’d been in the hospital 3 times with symptoms like the blood can’t pass through the veins. He needs to be hydrated and take aspirin 81 mg every day. The spleen is 3 centimeters mora big also. So no contact sports for him. And he is small size, skinny. I consider he is like that because he also has ADHD. And he has problem with the texture and flavor of the food. God bless you. Hope! ❤
I am 72 and had been diagnosed with thrombocytosis in my early 60, it has been a ride i have tried the cancer drug they say is the only treatment, two different times and both times I had side effects as they called it, they were intolerable and I quit that. you see they said I would have to take this drug for the rest of my life. That doesn't go over well with me. And now I have been told that I was not a good risk for a knee replacement with out treatment. How does it get better than that? I am always aware that this is my life and more than likely will be the cause of a shorter life span but hell 70s are quite a good long life. Never give up and live every second being fully engaged in being right here right now in the moment and breath the sweet breath of living. LIGHT and LOVE
Yolanda, I would love to hear more about your journey. I'm turning 60 in May and my doctor wants to start me on hydroxyurea now. I'm leery of the idea after reading about the drug. Wish you the best.
@@annetteunderwood7630 I so so many side effects from hydroxyurea that I believed that it would kill me. My doctor tried me on Anigrilide which has worked well for the last 2 years. She does my blood work every month.
Hi there I haven't felt good mostly in my whole life. And when I had a Mini stroke And when I had a Mini stroke I was noticing my blood work was saying high platelets. I continue to not feel better every time I got blood work the plate let's always high and the MPV low. So I went to hematologist And he Monitored me for one year and said yes you do have high plates but in the meantime II had already. Ask a different doctor why I have pain and I have pain in my left side in my right side and he tried to tell me it was fibromyalgia jah I said no this is pretty big pain. Well I have a very large spleen and and also fatty liver so so guess that's not fibromyalgia mealjah in the meantime at the hematologist oncologist. Told me he was going to run a lot of blood tests and that they were expensive and then he came back and told me I had the Jak 2 mutation . I also have a stemi heart attack with 2 stents . So now I'm on hydroxyurea so far its not lower my platelets. So he raised the dose . I started having head sweats at night when I was 35 thats when I believe it all started by 55 Is when I got diagnosed. ET with Jak2 hope my spleen does not grow any bigger and I don't get worse off taken this drug. Thanks for sharing your story
I was diagnosed when I was 29 and I am 44 now. I have the Calr-A genetic mutation. I too suffer from brain fog. I've had numerous iron infusions. I also took hydroxyurea and a couple others. In my particular case iron helped me the most. The doctor told me the exact same thing they told you which to me was not enough. I have also watched all those boring and hard to understand poorly taped lectures.
Similar to me dx with Calr age 28, 30 now so 2 years in..Any issues in your 15 years other than brain fog? Looks like calr is more favourable in terms of clotting risk
Hi! Thanks for sharing your story. I've been searching here about this rare disease. My mother in law was diagnosed with this and taking hydroxyurea for 5 yrs and im afraid my daughter has it too since this is hereditary. My 14yo daughter got infection and requested for CBC, her platelet reached 833 but after taking antibiotics her cbc platelet was 523 ( still high). I haven't took her for a 2nd opinion. But im still hoping and praying that she hasn't got this blood mutations. Anyway i hope you'll get well soon, sending prayers 🙏
Going on two years now I know how sad you feel and scared but just take things a day at a time. I'm on Hydroxyurea 1000mg daily minimal side effects. I take it later at night, so it doesn't affect me during the day as much. My count was critical when it was found over 1100 and I'm currently holding at just under 400 and I'm still here so keep the faith. Mine is from a CALR class one mutation not a lot of research on this yet but there are new studies coming out.
You can live with it,I found out when I was 34 and I use Chinese medicine after a couple years with American medicine ,now 65,You can live a normal life if you can follow the principal said Chinese medicine and stay calm and balanced
It's very hard to find a good practitioner of Chinese medicine in America. I was thinking about karate. Karate teaches you to use chi energy. Its this energy that makes it possible to break through wood and concrete with a bare hand. My friend found a workbook for the Yuen Method and he helped me with my lymphedema.
Im 42 years old and I have been diagnosed with ET in March , so far couldn’t dare to take the médecine , it’s harmful ,n my platelets didn’t go low only if take iron supplements ! Cause I’m suffering my anemia , the doctor requested me reduce 450 ml of blood and I wish I didn’t do that . My iron went down n my platelets gets higher i suffered a lot from the pain n the symptoms… I drink ginger 🫚 ginseng,cloves and so far im starting a homeopathy treatment, if it work I will let you know … god bless you all
I was diagnosed with ET osis and it change my life completely. I was positive for Jak2 so it primary. Eating healthy seem to be a key factor with keeping my levels normal.
Hey Mel, I was diagnosed in 2019. After I had a massive PE and subsequent Stroke in 2017. I went 2 years without knowing anything about what had caused my life to be disrupted so abruptly. Now I’m on blood thinners and aspirin and I do phlebotomy’s every 2 months. The most difficult part for me is night sweats and itching.
Hey Everyone, I have had ET since 2017. I still live a pretty amazing life! I have been a pilot for 24 years, mountain bike each day, still doing martial arts and breakdancing at 43. I have learned over the years you control your life and destiny and the ET does not control you. My platelets stay between 300,000-700,000. I was on chemo for a while but decided to get off. Fasting helps, vegetarian diet helps, 35% food grade hydrogen peroxide helps oxygenate your blood. Although rare, ET is highly manageable. I am experimenting with frequency healing at the moment which seems to help. Kind Regard’s
God bless you Mel I’m 31 male and just got diagnosed with E.T Jak2. I don’t know anything other than having to take the pill and will live my full life span. I highly believe we will be okay. Thank you for your strength.
I was diagnosed in 1989. At that time there was no information. I'm 59 now. The symptoms are just starting to disrupt my life. Exception I've been tired chronically. ONLY now is it getting worse. I hope you keep your appointments for your counts. RECENTLY. research is Finally in the works. Idk if it's for you personally. Incyte has a research program, including others who have MPNs Please take good care of yourself. Im not very tech savvy. Trying to send you pictures of my workbook, tracker for symptoms and counts. Anyway. It's Incyte MY MPN
Im 42 and was diagnosed at 40. My blood platlets were very high and I tested positive for a jak2 mutation. I itch alot. I also clogged the blood return machine when i donated plasma. That was fun. Im tired alot and i get confused alot. Seems odd to say but I have trouble thinking and problem solving. Its very confusing cause nobody i know has ever heard of it.
My platelet count has consistently been in the 480 to 550.... with a low MCH and low iron levels. I'm worried because I'm constantly in pain and my Dr diagnosed me with fibromyalgia but the elevated platelets that keep staying high kinda scares me and I get the absolute worst migraines all the time.
Lace, tell your doctor you want a test to rule out ET. I don't think your platelets are extremely high as I have been at 850+ since diagnosed in 2017. But again, ask for the test. You have to be super pro active with any diagnoses. Your best advocate is yourself.
You have anemia 😢same like me .. I’m sure you don’t have mutation , to be on the safe side check your doctor . You might have a deficiency in iron that’s why it’s little bit high …
Hi! Try not to worry. I was diagnosed with ET 25 years ago. Now am 65 and worked Ft active career all the way through. It is difficult in that it is rare.. heard only 5 % of population have it.
@@LisaNewman-qe2ie I thought that hydreaurea would kill me , weight loss , hair falling out, muscle loss , walking up the steps was slow and painful, resting heart rate went from 58 to 78 , neck muscles were so sore that I couldn’t turn my head but just a little,when I came home at evening in the month of June I was freezing cold and sat in recliner under 5 blankets , when l went to bed on the couch I always woke up at 3:00am soaking wet from night sweat. I actually had to change underwear and dry off with a towel and nausea was also bad . Before I found out about ET I had a couple nose bleeds that wouldn’t stop only by ice pack over nose. In march of 2021 my routine blood work showed 666 , that’s right the mark of the beast, 40 days later it was 730 then I had a light stroke and Vanderbilt doctors said it was 970 .After many test and marrow biopsy it showed ET . I truly think that a lady doctor saved my life when she put me on Anagrilde, . My platelet stays around 350 -450 . My doctor immigrated from Sri Lanka . They do my blood work every month and I’m used to getting stuck . I welded in a nuclear plant for 3 months in 1990 and was exposed to approximately 2600 millirems of radiation and best I can tell that’s like 500 chest X-rays going thru the body .
@@420Gold I was diagnosed 5 days ago with 494 platelet count, JAK2 mutation. The doctor said that I’m low risk for a blood clot but recommends taking a 81mg low dose aspirin daily. I haven’t started taking it as yet. So you didn’t started taking it until your platelet count hit 1 mil? This is mentally draining and I have lost my overseas military orders due to the discovery of ET. It’s like my life is upside down right now, I’ve lost 11lbs in 5 days because I don’t want to eat.
I have ET drugs have failed me after 6 years. I have seen videos from doctor Rubin Mesa on UA-cam. It gives hope of new meds that not only treat ET, but cure it. You may be a candidate for the clinical trials.
I was diagnosed with the same condition but didn’t know it was a blood cancer the specialist really didn’t give me much information. My platelet count is high but they didn’t do a bone biopsy.
Hi Claudia, me also my consultant informed me I have MPN ET so do I have cancer? no he replied however, we often treat it with cancer medication, really confused so is MPN ET cancer or not?
Hi @@70sboy62. You probably have your answer by now. In 2016 the World Health Organisation diagnosed Essential thrombocythemia as a type of cancer. You can read more here. www.ncbi.nlm.nih.gov/pmc/articles/PMC7042222/
@@70sboy62 Yes, it is a blood cancer. Perhaps you should see a a hematologist/oncologist. My 1st hematologist played down my condition when I was first diagnosed. I changed doctors and feel she has more of a pro active approach.
Claudia, my second doctor was more proactive and did a bone biopsy. It made me feel more confident in my doctor taking a proactive stance. The biggest thing about a bone biopsy is that it establishes a baseline which I think is very important to have.
Welcome to the world of RARE conditions! (I refuse to use the word: 'dis-ease'). So, on THAT note...a condition is something that CAN be 'managed'. Do we really have any control over anything? LOL We are here to teach others, (Including the doctors) as they NEED us, to learn from! I've found doctors who have been in 'business' for over 50 yrs. and they have admitted I was their ONLY patient with a certain 'condition'! That blew me away! In 50 yrs. I was their ONLY patient, so what could I expect from their expertise? Wow, we think they can help us, in this confusion of not understanding what it is we suffer from, when they don't have a clue! Just, WOW, now who is suffering from what delusion? Expectations? Flying by the seat of our pants, blowing in the breeze, out in the storm, in the Hurricane solo...learn to fly, learn to swim, learn to hold your breath, learn to breathe! Welcome to the world, you aren't alone in, the strangers are friends you haven't met yet! Blessings in the Journey!
Hi Mel I’m 50, Live in Sydney Australia and diagnosed with ET Jak2 condition 6 months ago, I have blood tests each month to check platelet count, I’m on the hydroxycarbamide now increased to 2 tablets a day. I’m told I’m on the lower end of it being an issue with my last plat count at 454. I too get brain fog, forget names of things but assumed that’s just getting old. I’ve also notice I bruise very easy too. Otherwise I feel great and just keep waiting for the “what happens next” kind of thing and I guess also looking for the same answers… What happens now?
I was diagnosed with a ET.jak2 mutation two months ago the doc what on Hydrea chemo pill platelet count was 650 aspirin every day not sure if I want to do chemo pill any options
Hi I just ran across your video and wondering how you are doing I also have ET starting treatment on Monday with Pegasys I am happy and I am scared at the same time but I guess this is life now I hope you are doing well
Hi l have been diagnosed with ET since 2018 and l am treated like you with Pegasys I have jak 2 mutation. Starting at 20% but now it reduced to 4%. I have reduced the amount of interferon to just 5 mg every two weeks from initial treatment of 13.5 mg every week. now l feel quite good with very low side effects. There is also a new type of interferon called ropeginterferon that you take once a month. But it is not available in Sweden where l live.
I was diagnosed with essential thrombocytosis . They gave me iron medication and tons of lab work. I am always sick it feels like . Have any of you had Essential Thrombocytosis and then later down the road got diagnosed with something else?
I'm not sure but look up comorbidities for ET. A lot of chronic illnesses have them. I have POTS, hEDS and MCAS. I honestly don't recall all the things I've been diagnosed with. 67% of people who get covid are getting POTS. You can get it from other conditions and viruses as well as PTSD. I have Epstein Barr and hEDS. Both of these cause pots. So far I've found three causes and I also had covid so that makes 4. I have some symptoms that I'm not sure what they are caused from, but I only have an understanding of POTS. Its hard to find a doctor to explain to you what symptoms are caused by a particular condition when you have several different ones. Im guessing it's probably more likely that perhaps you have another undiagnosed condition as well as ET. You can always seek out a second opinion from another specialist. They can tell you if your doctor was mistaken about your bloodwork. If a second doctor confirms your diagnosis then it's time to figure out what else is going on. I'm finally jumping through the hoops to prove I'm not just mentally ill. This diagnosis is a huge part of the reason people are finally taking me seriously. Pretty sad you have to get blood cancer before anyone believes you.
Thank you for sharing! I’ve been busting my butt trying to find peoples ET stories and it’s rare so there’s not much. Glad I found your channel, I’m 30 and was recently diagnosed with ET
Thank you for sharing your story. I am in my 50's and was diagnosed earlier this year. I have ET with a CAL-R mutation. My Platelets are running around 950 -980 for now. My first doctor tried to get me to start Hydroxyurea, but my gut told me not to start it and get a second opinion. I am so glad I trusted my gut. The new doctor specializes in MPN's. and said we are not there yet to have to start taking those meds. I am only taking a low dose daily aspirin for now. So Glad I found this and can connect with other people like me.
Hi.. I’m 65 diagnosed 17 years back and choosing same route as you. Platelets also run 680- 950. My Mom had this as well. She did Hydrea. .. for now I’m doing baby aspirin and no hydrea. Rare- genetic/ chronic. I did have a blood clot treated with heparin last year. Have high blood pressure medicine. I have had a normal life working full time till turned 65.
@@LisaNewman-qe2ie 18 years back for me. took Hydroxy for years, just switched to newer drugs
Mel, I'd love to see you post again. I hope your doing well and thank you for bringing all of your followers together. We, like you have been searching for others to help us through our journey. I hope you're doing well and would love to hear from you again! 🙋♀️
I’ve had known MPN for 4 years now. I was 39 y/o at the time. I looked everywhere to see if anyone else has this. Mine is CalR type 1. Thank you for doing this video. It will be so helpful to so many.
Hi Mel. I hope you're finding out that life can be normal with ET. I was diagnosed with ET about 15 years ago. I'm now 68 and still doing fine. Stay on top of your platelet count with blood tests every three months at the longest. I assume you're taking Hydroxyurea and aspirin, keep that up. There's no reason why you won't have a long, wonderful and fulfilled life. Take care my ET friend. :)
Don't be scared honey, I have had it for 10 years and it has very much stayed under control. I assume you have a hematologist and just do what they say to do. Get you checkups when your supposed to and take your meds like your supposed to and it will be fine. Normally you live a regular life span. Pray and I pray Jesus will heal you. God Bless
I do the same. I just deal with and be friend with my disease because it is my constant companion now whether i like it or not.
I got diagnosed when I was 10 years old and I'm now 25 I have check ups every two months and still feel ok
Hello. I am 41. I was diagnosed with ET last 2020 after bone marrow biopsy confirmed jak 2 positive. I am on aspirin 81mg daily. My hematologist did not prescribe me hydroxuria because he said I’m still young for it. Lately having fatigue, in frequent visits to e.r. due to chest pain, shortness of breath and palpitations. Doctors advised me to see a psych doctor due to my anxiety. Never told any family member about it. Nice to know and thank you for sharing your experiences.
I’m 42 years old but my doctor gave it to along with aspirin , I refused im under homeopathy treatment hoping it works , and so far I’m feeling less pain on my bones …
Thank you for bravely sharing your story, Mel. I have had ET since June 2011 where my initial platelet count was over 950. I take Hydrea daily (2 x 500gm), and for me the side effects are dry flaky skin. I live in Brisbane Australia with my wife, Mim, and a dog, Napoleon.
Essential Thrombocythemia needs to be monitored regularly, and I normally do the blood test twice a year with the goal of having the platelet count under 400.
I have a strong faith in God and will be praying for you and your husband and family. It is a shock to have the diagnosis, especially at your age. I’m 65 this year, but I may have had ET for years before being diagnosed, so don’t be too hard on yourself.
I’m also a type 2 diabetic, and after a number of slack years (I let myself go a bit), I’m getting my HBA1C down to 5.7, which is a good number. I recommend having a good doctor you can trust and talk with. Especially someone who is able to help you understand what is happening.
The thing with hydra … it lowers more our immune system … even with the disease that we are suffering from our immune is low .. so far I’m starting a homeopathy treatment I order it from India … so far at least I have very less pain in my bone …
@@am30wish Bone pain, when I was diagnosed with Pare Thyroid tumor, this explained much. Got the throat cut, removed that tumor, threw the calcium at the issue, to hopefully reverse the damage for years a doctor did NOTHING, until I was curious as to what causes HIGH calcium and low Vit. D and that whole mess (YES, I fired that doctor) and had to take my medical issues into my own hands! PTH test and results verified that horror of my reality. So, whether that caused this high red blood cell issue, I find I'm curious about connecting the dots, what came first, what did what, fix the root cause and find the link(s) and fix this until that goes wacky and array? Rolling my eyes. And YES, now the eyes are being affected and the damned floaters are being obnoxious menaces, for sight issues! UGH...(insert scream here). I'm waiting for a therapeutic order for phlebotomy (which is like pulling teeth) to get. Dentist, is like pulling teeth to get work done, even after it's been paid for in full prior to and forgotten, hoping you die, would they refund the money, being they haven't done the work? Frustrations on SO many fronts, I want to have a hissy fit and slap them all for their lack of care! First do NO Harm! Hurry up and wait, is what I've learned, to have patience, in being a patient.
Hi Mel,
I was diagnosed in February 2022, Im 41. Like you at a loss with all of this information being thrown at me. Im ET w/ anemic and splenomegaly and a platelet count of 1.6M. being treated with hydroxyurea. My significant other turned out to be not that significant cuz he couldn't deal and left, or I should say, made me leave. Im now single, homeless and completely lost. Your not alone and neither am I. He left me his 200 lb dog, Bull Mastiff, Great Dane, named Tank. (not pictured above). Thanks for listening. Literally, I have no one to talk to about this.
Come to Jesus He will heal you
Hi, my wife (35) was diagnosed with ET last week and has a biopsy scheduled for next week. The waiting and worrying leading up to this biopsy is nerve racking for both of us. It makes it slightly less scary to know others are also dealing with this. Have a great day Mel.
I’ve had ET since age 32 and I’m now 58. Only started Hydrea about 13 years ago when I had a toe wound that couldn’t heal.
I’m only taking 500 mg of Hydrea instead of 1500mg per prescription with a baby aspirin every other day. My platelet count is 800+ with this dosage and besides lacking energy and gastritis caused by the aspirin, I’m otherwise living a normal life.
Hope my experience with ET can alleviate fear about this condition and can give some hope & comfort for those who have it. Lots of love and God bless.
Thank you for your comment.
I’m 32 and I’ve just been diagnosed.
Did you started taking a baby aspirin daily from you were 32?
Do you travel or go on long flights?
Did you have children with your diagnosis? I just found out I have ET bc of fertility treatment blood tests and I’m scared I won’t ever be able to have a baby
@@heathervitt6060
They are people that that still have babies after being diagnosed. I am one
Thank you for the video just found it today. My husband was diagnosed with ET 4 weeks ago. I like to know as much information as i can! As you said, there's not a lot out there. Stay strong, and you have done an amazing job putting your thoughts and feelings on here. I am so grateful 🙏
I’ve been diagnosed with JAK2 and positive for MPN
I’m 57 and my wife and I are both very concerned and scared. We can’t find much understandable information.
So hi and you’re not alone.
im 42 years old and i have been diagnosed with the same thing,i didn't take any drugs so far i was suffering from the symptoms as they are so painful,as i was searching about the sickness i found at that homeopathy can lower the platelets count ... i started it few days ago believe even pain in my bones started to get less...
I was diagnosed in late 2020, JAK2+ (at 19 years old)
At first I was very scared about what it meant but now I take comfort in the fact that the chance of progression to other cancers is very small and there are many treatments available to keep it in check. Coming to terms with the symptoms and health management is the difficult part.
What's your age and what test defects Jak2 please suggest me
@@heer415 I am 21 now, diagnosed at 19. A blood test can confirm a JAK2 mutation (or any of the other MPN mutations) but a bone marrow biopsy can tell you how severe the MPN is and some other information about how your bone marrow is working.
@@Francesca-dq9lr how are you in this Time and how many platelet count in your body please tell me my plt 5 lake and Indian doctor not serious this
@@heer415 I am mostly good 👍 but I get bad fatigue and headaches. My platelet count is 730, and I take 1 aspirin a day to prevent blood clots. I won't start the stronger medicine until my platelets are at least over 1000.
@@Francesca-dq9lr your platelate is low (1000) then how get JAk2 jiska high platelet count hota h unhe hota h na
Okay, I don't know where to start but as people say at the beginning. This may get long. I found your video so I wanted to tell you a bit of my journey with ET. I was diagnosed in 1978 at the age of 30. I'm a woman with many health concerns but ET has not been a major problem. When I was diagnosed there was very little information available for the general public. I had a bone marrow biopsy and was treated with chemo. It helped settle things down for a while. I have been on 81mg. Aspirin and Hydroxyurea off and on since then. So far it has only impacted my life in ways I have managed to deal with. I have had surgeries with few problems. I am careful to make sure that all my health care providers know I have it. When I was first diagnosed I would have to explain to them what it was. Now not very much. When I was diagnosed my platelet count was over 2million. Every so often I quit talking Hydroxyurea and then the count skyrockets to 2million. I have never gotten down to the accepted count of under 450,000, but, I have managed to live life without the ET being my focus. Other than not being able to donate blood products or organs, I try not to let it interfere in living. I can't think of anything that I wanted to do that I couldn't because of it. I am the kind of person who when I want to do something I will make every effort to do it. I don't know if or when ET may progress to anything else but then, maybe something else will happen before that. Something that I have done is to make sure that I don't eat sugar and anything starchy. I have found I am sensitive to many foods. At this point in time my platelet count is usually between 560,000 and 540,000. It's not where my oncologist wants it but that's where my platelets are. I hope this information makes it easier for you to accept and get back to enjoying your life!!
Totally agree! I was diagnosed with ET 20 years ago when I was 16, and had no medication. 10 years later I did the biopsy and it was confirmed, started medication. I’ve been on and off with hydrea depending on how I eat, and my plate count.
I the best thing for this is take one day at a time and go through life.
@@dceron1 does what you ear effect PLT count?
My sister was diagnosed with ET 2years ago she is 82 but is doing ok,still getting about with her friends and family and I support her all I can god bless ❤xxx
Hi
I am 38 yrs old and I have recently been diagnosed with ET (CALR) mutation. My emotion is all over the place. I don't why it happened to me . I lived a disciplined life .
Looking for someone to share the experience .I am so broken and depressed from inside. The fear of cancer and what it may lead to is always at the back of my mind. I see normal people friends and I break down.
I hope you’re doing better.
Thank you for sharing your video. I was diagnosed with Essential Thrombocytosis in 2021 after a Jak2 bone marrow aspiration and biopsy was negative in 2010 with Secondary Thrombocytosis. 2021 I had another bone marrow aspiration and biopsy done. I was found to be Jak2 negative, MPL positive and CALR negative. This combination makes up 1-5% of all Essential Thrombocytosis diagnoses. On top of that percentage, I'm male and make up 1- 3% of the other small percentage. I was a Elementary School Physical Education teacher and was feeling weak. My platelets tested high in 2008. Numerous tests were done. I also found out that I have a Complex Seizure Disorder from my posterior frontal and left temporal lobes of my brain. I am seeing a specialist for 9 months. I've been prescribed an oral chemo capsule of Hydroxurea. My blood is tested every 3-4 weeks to see how my blood levels are. My chemo pill has been increased 7 times. I will be getting my stem cells tested, my HCL stem cell markers identified and entered into the National Registry for Bone Marrow and Stem Cells to begin finding me a suitable donor. My reticulum fibers in my bones are starting to increase in number and size. They will eventually form scar tissue in the bone marrow. I continue to live and love life while I listen to my body. Not worried about ifs and whens. Hang in there!
No 'expiration' date on the bottom of either foot! ;) Here for the long Journey! Not willing to poison myself with acids of chemo or radiation. Guess I'm a strange bird? Learning natural path of how the body works and when it is sick it is acidic, when it is Alkaline, it is well. Why add acids to be 'cured'? Belief systems are hard to wrap my mind around, when it is beyond barbaric to understand? I've had to cure CV with L-Lysine and pure red grape juice and baking soda in water, to find 3 days fixed what suffered for 3 straight months, even I was amazed that it went away in 3 days! Learning. Key. Search for answers!
What will if bone marrow has scarring?
I'm 76 and was diagnosed 13 months ago, ET with CALR Mutation. 10 months on hydroxyurea failed. Now on Busulfan.. Side effects are life changing. Welcome to the world of brain fog and fatigue. But some days are quite clear. Now refusing statins, don't want even more side effects. How do you take these meds and still have a life? My friends don't call much anymore and are slipping away, cancer scares them off. Daily life is defined by the changing levels of Chemo Brain (fog). Add Covid fear into the mix and its all a weird new reality of day to day life. Had Evusheld shots protecting against Covid available to people on Chemo. Melanious thanks for posting. Have subscribed and will watch for your next post. Hello to all you fellow travellers on this ET journey.
I thought surely that I would die on hydraxyurea , so many side effects. Anagrilide has worked very well for me
You should join mpn team. I am 33 year old i have ET since 2019 . Be positive . Be strong
Thank you so much for doing this and filming this. I’m struggling with chronic health issues and really believe there is something related to my bone marrow and blood potentially cancer. Already diagnosed with chronic fatigue and fibromyalgia and autoimmune disorders that have not yet been confirmed. I recently also had a high platelet count along with low iron. And for the last several years have had so many different lab results and I had to review them myself and look up potential meanings for the things in the abnormal range and consistently the things that are off indicate lupus or blood and bone marrow cancer. Lupus has been ruled out despite having all the possible symptoms. The hardest thing to me is how much of struggle with energy and memory and cognitive issues and I have a high needs child to care for and can’t maintain the energy to seek out the help I need and advocate for myself or how frustrating it is because I also forget important things in appointments. I’ve made lists and had a doctor refuse to look at it. He decided by looking at me I was young and there was probably nothing wrong with me. I’ve felt with gaslighting and shame and what feels like an abusive relationship between me and health care providers for years. I’ve lost everything. My ability to work or even do some of the smallest things. My only hope is to get answers and turn to the specialist and doctors and I feel like I’m being let down. I also don’t want to find out I have some type of life threatening cancer only after it’s become so much worse that my odds of getting the most out of any available treatment will be diminished.
Hello everyone!
My name is Adrian, I live in Romania and I was diagnosed with ET in 2021 one month before the pandemic, I was 32 years old then, I had investigations, bone marrow biopsy, hydrea and anagrelide treatments, (interferon alpha is not available and not subsidized by the state)... It's been 3 years since then, I haven't managed to get into normal range with these treatments, I will probably resume treatment with hydrea as soon as possible, it's a difficult period although it's been a while, and there are times when psychological support is essential, I'm thinking of making a community where we can get together to discuss and offer support to each other. We need to be serene, optimistic and live this life to the fullest no matter the circumstances! I wish you all good health and I am glad I found this video and could share these thoughts with you.
Im in my dear !! I have the same diagnoses 😢
Thanks for the video.
My son who is 22 was just diagnosed with ET. We wait to go back to the see the hematologist/oncologist.
Thank you for sharing I have just been diagnosed with this illness x
It is a long time sense I watched this , so I am surprised that I got something noted on my email. I tried 3 times to do the drugs and I had reaction to them. (both mental/emotional and physical. I am now 73 and I am still here. I made my choice to ride this through. On my own, I make every day my love for my body and all the changes which are from this blood dis- ease. and just be fully in the now, I am older than you and all I can say is to find your way with or without the medical treatment. i am do fine after I came to terms with all the points of view about this mutation and life and living. So no matter what you have or will choose through this life in your body, all I can say is embrace every moment and find peace and love for you and you amazing beautiful BODY!!!!😍💖🕉🕉🕉🕉☯
Hi, i respect your choice and wish you all the best! Can you please tell me how you're are doing, as my Mom was just diagnosed 3 days ago and the dr wants to start her on a low dose of hydroxyurea. She is 87 but extremely healthy and is non symptomatic.
I've had ET for at least 11 years probably longer. It was discovered during a routine blood test when I moved house and had to find a new surgery. At first we didn't know what was wrong and I had all kinds of tests. Camera put down my throat and bone marrow samples taken from my back. It was the bone marrow sample that was sent to Liverpool University that came back as positive ET. I have regular appointments with my haematologist to keep an eye on the platelet count. No two counts are the same by the way so we manage it with Hydroxycarbamide. Three tablets every day to keep the count down. Last count was 620 but when I was first diagnosed it was over 1600. Sorry I'm late finding this video I was just searching for something else that brought me here.
thank you for doing this i just found out day before yestderday i have MPN and i real couldn't find much like you siad a buch of doctor and other thing but not real much explining of what it is thank you for making this video it real helped me i have doing a lot trying not trying cry and taking it in but again thank you for making this video it made me feel a little better :)
I am sorry to hear you're navigating a diagnosis as well. It can be so desperately overwhelming at first, with so much information coming from so many different sources-- I'm glad I was able to offer even a little bit of comfort
Thank you for posting. I'm just looking into this as I've just found a friend has this. Reading about diet and what people can do to maximise the quality of outcome. Post some more videos and let us know how you're getting on 👍
Sending healing hugs!
I’m 82 and had it for the last three years. I’m in a new treatment now called vadaza. I have other complications with it. If you want to talk don’t hesitate.. God bless and keep you safe.
I totally sympathize about what you are going through because I am right there with you ! I was diagnosed with polythycemia vera in July of 2021 !
I am going to a Hematologist next week. So far my blood work shows that I have anemia,Thrombocytosis With a blood platelet count of 634k I am hoping that the cause is not cancer related but all I’ve been seeing online about it speaks of it in terms of being a precursor to an underlying serious condition eg. cancer, anemia, infection, injury. I have extreme pain in my left leg back ankle and the back of my thighs pulsate like palpitations every so often. I take iron daily and I am just starting to get back to working out after so long of being sedentary while working from home. This ankle has been hurting me since 2021 and It’s just starting to get worse. I’m going to a Podiatrist tomorrow to see if there is an injury. Hopefully that is the cause. I am sorry for everyone dealing with this and I pray for healing for each and every one of you. I may not know you but I love you and will be in the fight with all of you.
Thank you for the lovely message me too at the Begining I was suffering from anemia but the case was totally after that when my platelets didn’t go low … I made a mistake taking out 450ml blood my iron gets lower and platelet to 1M …. I was devastated I make things worse but I was following the doctors recommendation. And the thing he asked me to stop the iron and always have that believe that iron will help cure my symptoms at least … so far I didn’t start any médecine only i red a blog about homeopathy treatment from India and start feeling better at least … let’s prey and hope it will work
Thank you for sharing 🥰 i had Cluster headache for weeks. I gave up and got into Hospital after a lot of doctor appointments. They found Out that something with my blood is not right. February 2020 i got the diagnosis jak2 positive essential thrombocytemia, and i was 21 years old at that point.
And then in August 2020 i had a bone marrow biopsy and they added early primary myelofibrosis. My med is acetylsalicylic acid, 100mg per day.
After the diagnosis, that day my world collapsed. I have anxiety about it an struggle everyday with fatique, bone pain, circulatory disorders and itching. And also the mental point is hard. I am happy about Connecting, also wonder if the us is further in the therapy Stuff or with the science, because I am from germany
all the same here,i didnt take any drugs im starting homeopathy medecine , i had it few days ago and i start feeling much less pain in my bone ....
@@am30wish what do you take? I tried OPC, MSM, Lysin (German words) ..and more . Maybe i can try yours as well
@@chanteme6099I’m not sure exactly what is your médecine ! But mine I have ordered it from India it’s natural remedy … the names are not easy to remember one element I remember is the phosphorus which I red before it’s good for high platelets… please keep in touch and let me know what you are taking ..
@@chanteme6099it’s the doctor who prescribed fro me the médecine I didn’t take it myself …as for today I had severe symptoms on the neck head and felt dizzy it’s almost one week I think the médecine starts working …😢
@@am30wish What the doctor prescribed me is a blood thinner. And the others are dietary supplements (grape seed extract, methylsulfonylmethane, lysine, vitamin c and others like magnesium and so on),on a natural basis, which unfortunately did not bring me any improvement in that area. Unfortunately, my doctor keeps saying that my symptoms can't come from it, which is really frustrating. I am so happy for you, its starts working. If you find out the Name, let me know.
I was 35 when I was diagnosed with Primary E.T. w/JAK2 mutation in 2017. I take HU and baby aspirin daily. I also was diagnosed in 2003 with Osteosarcoma, had my middle finger amputated and went thru a year of aggressive chemo. But, anywhos, you didnt say anything at all about your "E.T." diagnosis, your C.B.C numbers, your treatment plan(if any) etc. If you have Facebook, their is a private group(which im a member of) that has a couple thousand members currently enrolled. If you feel alone, trust me, youre not in terms of your diagnosis
Shame that two years later there is still nothing on UA-cam on personal lives of people with ET. I’m 34 and just got diagnosed. Completely by accident through my annual bloodwork. My WBC & platelets had been high for at least four years but in the absence of symptoms, my primary physician never got concerned or followed up. This year my doctor changed and my new doctor wanted to follow up with hematologist and within two weeks… here I am. It’s scary and feels lonely.
Hydroxyurea had so many side affects for me that doctor put me on Anigrilide which seems to work well for me
Hi Mel,
I live in South Africa. The sun is always shining here and there is always the risk of developing skin cancer if you have a light skin. I developed a growth on the lower eye lid of my right eye. I do not know if it is cancer or just a benign growth but I went on a high nutrition diet for about two months and the growth have shrunk noticeably.
I would like to share the diet with you.
The soup
Ingredients: - two handfuls of Chopped broccoli, one chopped onion (purple), two bags of green tea, two pinches of mixed herbs, two sticks of cut celery, Two handfuls of frozen and crushed spinach or kale, half a table spoon of crushed garlic, Three shakes of black pepper, seven shakes of turmeric, two tablespoons full of apple cider vinegar (with the mother), one bag of white onion powder soup for flavour, a hand full of cooked red speckled beans and a handful of cooked mince meat.
Just add all the ingredients in a pot, add boiling water and switch the stove on high till the water boils. Then lower the heat until the water simmer, Let the soup simmer for an hour. The soup is now ready.
I would only drink water in the morning. At 12h00 I would start eating the soup. There will be about two helpings that you can eat in the 12h00 to 18h00 time frame. I also ate a fruit salad every day in the 12h00 to 18h00 time frame.
(Note: Apparently turmeric reduces the effect of some chemotherapy drugs and thus should not be taken during chemotherapy.)
During the rest of the week I would also eat food that contains vitamin D like avocado’s, mushrooms, liver and eggs in the 12h00 to 18h00 time frame.
It seems to be working for me, maybe it will also work for you.
I pray to God the Father in the name of Jesus Christ that you will be healed. Amen.
I would also like to share the following six videos with you about salvation and two videos about evolution:
Evolution vs. God
ua-cam.com/video/uc_W9VtzJ0A/v-deo.html
DESTROYING Evolution In Under 3 Minutes
ua-cam.com/video/sWecPwrQv2c/v-deo.html
Watch the Holy Spirit Work in Her Heart (Very Moving)
ua-cam.com/video/iBEoI2u6kII/v-deo.html
Fearing The Lord, God’s Discipline & Sharing The Gospel
ua-cam.com/video/dES5WW66Mro/v-deo.html
A Clear Gospel Presentation by Pastor Steven Anderson - How to go to Heaven
ua-cam.com/video/IXEeMWCxyrQ/v-deo.html
The Plan of Salvation
ua-cam.com/video/PmkhRMPvt_0/v-deo.html
How to Get Saved
ua-cam.com/video/ajWdkuvrT6s/v-deo.html
The Truth About Hell (Selected Scriptures)
ua-cam.com/video/AVzbh_dLq3s/v-deo.html
Best regards
Chris
“For God so loved the world, that He gave His only begotten Son, that whosoever believeth in Him should not perish, but have everlasting life”. John 3:16 (King James Version Bible)
Jesus Christ is the only begotten Son Of God the Father.
Hello 👋🏼. My son has ET or PV, but more seems like ET, since 2 years old, doctors identified by regular blood test. Now, he is almost 10. My language is Spanish. I try my best writing in English 😅. I just want to say hi and share our story with you. We’d been in the hospital 3 times with symptoms like the blood can’t pass through the veins. He needs to be hydrated and take aspirin 81 mg every day. The spleen is 3 centimeters mora big also. So no contact sports for him. And he is small size, skinny. I consider he is like that because he also has ADHD. And he has problem with the texture and flavor of the food. God bless you. Hope! ❤
I am 72 and had been diagnosed with thrombocytosis in my early 60, it has been a ride i have tried the cancer drug they say is the only treatment, two different times and both times I had side effects as they called it, they were intolerable and I quit that. you see they said I would have to take this drug for the rest of my life. That doesn't go over well with me. And now I have been told that I was not a good risk for a knee replacement with out treatment. How does it get better than that?
I am always aware that this is my life and more than likely will be the cause of a shorter life span but hell 70s are quite a good long life. Never give up and live every second being fully engaged in being right here right now in the moment and breath the sweet breath of living. LIGHT and LOVE
Yolanda, I would love to hear more about your journey. I'm turning 60 in May and my doctor wants to start me on hydroxyurea now. I'm leery of the idea after reading about the drug. Wish you the best.
@@annetteunderwood7630 I so so many side effects from hydroxyurea that I believed that it would kill me. My doctor tried me on Anigrilide which has worked well for the last 2 years. She does my blood work every month.
Hi there I haven't felt good mostly in my whole life. And when I had a Mini stroke And when I had a Mini stroke I was noticing my blood work was saying high platelets. I continue to not feel better every time I got blood work the plate let's always high and the MPV low. So I went to hematologist And he Monitored me for one year and said yes you do have high plates but in the meantime II had already. Ask a different doctor why I have pain and I have pain in my left side in my right side and he tried to tell me it was fibromyalgia jah I said no this is pretty big pain. Well I have a very large spleen and and also fatty liver so so guess that's not fibromyalgia mealjah in the meantime at the hematologist oncologist. Told me he was going to run a lot of blood tests and that they were expensive and then he came back and told me I had the Jak 2 mutation . I also have a stemi heart attack with 2 stents . So now I'm on hydroxyurea so far its not lower my platelets. So he raised the dose . I started having head sweats at night when I was 35 thats when I believe it all started by 55 Is when I got diagnosed. ET with Jak2 hope my spleen does not grow any bigger and I don't get worse off taken this drug. Thanks for sharing your story
I was diagnosed when I was 29 and I am 44 now. I have the Calr-A genetic mutation. I too suffer from brain fog. I've had numerous iron infusions. I also took hydroxyurea and a couple others. In my particular case iron helped me the most.
The doctor told me the exact same thing they told you which to me was not enough. I have also watched all those boring and hard to understand poorly taped lectures.
Similar to me dx with Calr age 28, 30 now so 2 years in..Any issues in your 15 years other than brain fog? Looks like calr is more favourable in terms of clotting risk
48 old male. Got diagnosed with ET today. Crying like a little baby right now.
Hi Mark. Ty for sharing! I found out Friday and didnt cry until Monday. I have taken the week off work to come to terms with my feelings.
These days its pretty much curable 30-40 years ago it would be different story
@@ivo3598Thrombocythosis is curable?Dont think so.Check your facts bro
@@ivo3598it’s not curable… it’s chronic
I am praying for you sweetheart and your fur baby. ❤🙏
Hi! Thanks for sharing your story. I've been searching here about this rare disease. My mother in law was diagnosed with this and taking hydroxyurea for 5 yrs and im afraid my daughter has it too since this is hereditary. My 14yo daughter got infection and requested for CBC, her platelet reached 833 but after taking antibiotics her cbc platelet was 523 ( still high). I haven't took her for a 2nd opinion. But im still hoping and praying that she hasn't got this blood mutations. Anyway i hope you'll get well soon, sending prayers 🙏
38 years man whith ET. Thanks for your video. Thank you.
I was diagnosed at 22.. almost 28 now
Going on two years now I know how sad you feel and scared but just take things a day at a time. I'm on Hydroxyurea 1000mg daily minimal side effects. I take it later at night, so it doesn't affect me during the day as much. My count was critical when it was found over 1100 and I'm currently holding at just under 400 and I'm still here so keep the faith. Mine is from a CALR class one mutation not a lot of research on this yet but there are new studies coming out.
You can live with it,I found out when I was 34 and I use Chinese medicine after a couple years with American medicine ,now 65,You can live a normal life if you can follow the principal said Chinese medicine and stay calm and balanced
What kind of Chinese medicine did you use?
pls share
Can you share what
Meds u take?
It's very hard to find a good practitioner of Chinese medicine in America. I was thinking about karate. Karate teaches you to use chi energy. Its this energy that makes it possible to break through wood and concrete with a bare hand. My friend found a workbook for the Yuen Method and he helped me with my lymphedema.
Im 42 years old and I have been diagnosed with ET in March , so far couldn’t dare to take the médecine , it’s harmful ,n my platelets didn’t go low only if take iron supplements ! Cause I’m suffering my anemia , the doctor requested me reduce 450 ml of blood and I wish I didn’t do that . My iron went down n my platelets gets higher i suffered a lot from the pain n the symptoms… I drink ginger 🫚 ginseng,cloves and so far im starting a homeopathy treatment, if it work I will let you know … god bless you all
I was diagnosed with ET osis and it change my life completely. I was positive for Jak2 so it primary. Eating healthy seem to be a key factor with keeping my levels normal.
I got diagnosed when i was 10 which was a shock at that age im now 25 and still ok , stay positive
Just been diagnosed...its scary
Ivd had ET for a long time. Dont worry. Take your meds as directed, this will change up and down with time. Your ok!!
Hey Mel, I was diagnosed in 2019. After I had a massive PE and subsequent Stroke in 2017. I went 2 years without knowing anything about what had caused my life to be disrupted so abruptly. Now I’m on blood thinners and aspirin and I do phlebotomy’s every 2 months. The most difficult part for me is night sweats and itching.
Hey Everyone, I have had ET since 2017. I still live a pretty amazing life! I have been a pilot for 24 years, mountain bike each day, still doing martial arts and breakdancing at 43. I have learned over the years you control your life and destiny and the ET does not control you. My platelets stay between 300,000-700,000. I was on chemo for a while but decided to get off. Fasting helps, vegetarian diet helps, 35% food grade hydrogen peroxide helps oxygenate your blood. Although rare, ET is highly manageable. I am experimenting with frequency healing at the moment which seems to help. Kind Regard’s
God bless you Mel I’m 31 male and just got diagnosed with E.T Jak2. I don’t know anything other than having to take the pill and will live my full life span. I highly believe we will be okay. Thank you for your strength.
I was diagnosed in 1989. At that time there was no information. I'm 59 now. The symptoms are just starting to disrupt my life. Exception I've been tired chronically. ONLY now is it getting worse. I hope you keep your appointments for your counts. RECENTLY. research is Finally in the works. Idk if it's for you personally. Incyte has a research program, including others who have MPNs Please take good care of yourself. Im not very tech savvy. Trying to send you pictures of my workbook, tracker for symptoms and counts. Anyway. It's Incyte MY MPN
ITS CALLED VOICES OF MPN.
Im 42 and was diagnosed at 40. My blood platlets were very high and I tested positive for a jak2 mutation. I itch alot. I also clogged the blood return machine when i donated plasma. That was fun. Im tired alot and i get confused alot. Seems odd to say but I have trouble thinking and problem solving. Its very confusing cause nobody i know has ever heard of it.
Hello, I am getting a biopsy this week to determine my diagnosis. Since you are so young, what is your regiment?
Hi, I was diagnosed with a blood cancer, in October. This is very devastating.
My platelet count has consistently been in the 480 to 550.... with a low MCH and low iron levels. I'm worried because I'm constantly in pain and my Dr diagnosed me with fibromyalgia but the elevated platelets that keep staying high kinda scares me and I get the absolute worst migraines all the time.
Lace, tell your doctor you want a test to rule out ET. I don't think your platelets are extremely high as I have been at 850+ since diagnosed in 2017. But again, ask for the test. You have to be super pro active with any diagnoses. Your best advocate is yourself.
You have anemia 😢same like me .. I’m sure you don’t have mutation , to be on the safe side check your doctor . You might have a deficiency in iron that’s why it’s little bit high …
Hope u are better now
Male 27
Diagnosed with MPN ET in august 2022
Got the report positive today (MPL GENE MUTATION)
Hi! Try not to worry. I was diagnosed with ET 25 years ago. Now am 65 and worked Ft active career all the way through. It is difficult in that it is rare.. heard only 5 % of population have it.
Hi there, can i ask if you are on any medication for it?
Could take hydrea but for now choosing not too.
I have read that only 1.5 men in 100,000 get it so it’s more rare than 5 %
@@LisaNewman-qe2ie I thought that hydreaurea would kill me , weight loss , hair falling out, muscle loss , walking up the steps was slow and painful, resting heart rate went from 58 to 78 , neck muscles were so sore that I couldn’t turn my head but just a little,when I came home at evening in the month of June I was freezing cold and sat in recliner under 5 blankets , when l went to bed on the couch I always woke up at 3:00am soaking wet from night sweat. I actually had to change underwear and dry off with a towel and nausea was also bad . Before I found out about ET I had a couple nose bleeds that wouldn’t stop only by ice pack over nose. In march of 2021 my routine blood work showed 666 , that’s right the mark of the beast, 40 days later it was 730 then I had a light stroke and Vanderbilt doctors said it was 970 .After many test and marrow biopsy it showed ET . I truly think that a lady doctor saved my life when she put me on Anagrilde, . My platelet stays around 350 -450 . My doctor immigrated from Sri Lanka . They do my blood work every month and I’m used to getting stuck . I welded in a nuclear plant for 3 months in 1990 and was exposed to approximately 2600 millirems of radiation and best I can tell that’s like 500 chest X-rays going thru the body .
I was diagnosed at 24 in 2015. 8 years later still doing ok. Itchy like crazy though!
I wish you the best on your journey!
Thanks for sharing. Do you take a 81mg aspirin every day or what did your doctor prescribe to you?
Yeah, I started taking 81mg aspirin when my platelets got to 1mil in 2020. I don’t take any other meds. What about you? How’re you doing?
@@420Gold I was diagnosed 5 days ago with 494 platelet count, JAK2 mutation. The doctor said that I’m low risk for a blood clot but recommends taking a 81mg low dose aspirin daily.
I haven’t started taking it as yet.
So you didn’t started taking it until your platelet count hit 1 mil?
This is mentally draining and I have lost my overseas military orders due to the discovery of ET.
It’s like my life is upside down right now, I’ve lost 11lbs in 5 days because I don’t want to eat.
hello, im just wandering you take aspirin if your platelet go beyond 1mil? just found out mine is 722 thwn took aspirin for 30days go down to 601
Thanks, just looked at my blood work platelets 800. No diagnosis yet time will tell.
I was just diagnosed may 9. The day before i was leaving for italy. I went anyway... in a rabbit hole too
I have ET drugs have failed me after 6 years. I have seen videos from doctor Rubin Mesa on UA-cam. It gives hope of new meds that not only treat ET, but cure it. You may be a candidate for the clinical trials.
I was diagnosed with the same condition but didn’t know it was a blood cancer the specialist really didn’t give me much information. My platelet count is high but they didn’t do a bone biopsy.
Hi Claudia, me also my consultant informed me I have MPN ET so do I have cancer? no he replied however, we often treat it with cancer medication, really confused so is MPN ET cancer or not?
Hi @@70sboy62. You probably have your answer by now. In 2016 the World Health Organisation diagnosed Essential thrombocythemia as a type of cancer. You can read more here.
www.ncbi.nlm.nih.gov/pmc/articles/PMC7042222/
Hi Claudia. I recommend seeing an MPN specialist if you can. They know much more than regular hematologists or oncologists.
@@70sboy62 Yes, it is a blood cancer. Perhaps you should see a a hematologist/oncologist. My 1st hematologist played down my condition when I was first diagnosed. I changed doctors and feel she has more of a pro active approach.
Claudia, my second doctor was more proactive and did a bone biopsy. It made me feel more confident in my doctor taking a proactive stance. The biggest thing about a bone biopsy is that it establishes a baseline which I think is very important to have.
I'm 20y/o and diagnosed with ET. After that My life is depressed. 😢
Welcome to the world of RARE conditions! (I refuse to use the word: 'dis-ease'). So, on THAT note...a condition is something that CAN be 'managed'. Do we really have any control over anything? LOL We are here to teach others, (Including the doctors) as they NEED us, to learn from! I've found doctors who have been in 'business' for over 50 yrs. and they have admitted I was their ONLY patient with a certain 'condition'! That blew me away! In 50 yrs. I was their ONLY patient, so what could I expect from their expertise? Wow, we think they can help us, in this confusion of not understanding what it is we suffer from, when they don't have a clue! Just, WOW, now who is suffering from what delusion? Expectations? Flying by the seat of our pants, blowing in the breeze, out in the storm, in the Hurricane solo...learn to fly, learn to swim, learn to hold your breath, learn to breathe! Welcome to the world, you aren't alone in, the strangers are friends you haven't met yet! Blessings in the Journey!
I too have been diagnosed with this. I'm 56 years old. Know the struggle!!!
Hi Mel
I’m 50, Live in Sydney Australia and diagnosed with ET Jak2 condition 6 months ago, I have blood tests each month to check platelet count, I’m on the hydroxycarbamide now increased to 2 tablets a day. I’m told I’m on the lower end of it being an issue with my last plat count at 454.
I too get brain fog, forget names of things but assumed that’s just getting old. I’ve also notice I bruise very easy too.
Otherwise I feel great and just keep waiting for the “what happens next” kind of thing and I guess also looking for the same answers… What happens now?
32… diagnosed 6months ago. Randomly on a routine blood draw. I’d love to chat!
Can you share what triggered them to diagnose this? What your platelet count is? Did you have a bone biopsy?
Absolutely! I have another video coming explaining the medical side of things- but was delayed due to some major fatigue. Coming soon :D
@@sharksinmyblood can you pls put a new video with updates
I was diagnosed with a ET.jak2 mutation two months ago the doc what on Hydrea chemo pill platelet count was 650 aspirin every day not sure if I want to do chemo pill any options
How r u doing
Can I add it is not necessarily genetic
Hi I just ran across your video and wondering how you are doing I also have ET starting treatment on Monday with Pegasys I am happy and I am scared at the same time but I guess this is life now I hope you are doing well
Hi l have been diagnosed with ET since 2018 and l am treated like you with Pegasys I have jak 2 mutation. Starting at 20% but now it reduced to 4%. I have reduced the amount of interferon to just 5 mg every two weeks from initial treatment of 13.5 mg every week. now l feel quite good with very low side effects. There is also a new type of interferon called ropeginterferon that you take once a month. But it is not available in Sweden where l live.
I have it to with positive jak2 mutation and von willebrand disease
I was diagnosed with essential thrombocytosis . They gave me iron medication and tons of lab work. I am always sick it feels like . Have any of you had Essential Thrombocytosis and then later down the road got diagnosed with something else?
I'm not sure but look up comorbidities for ET. A lot of chronic illnesses have them. I have POTS, hEDS and MCAS. I honestly don't recall all the things I've been diagnosed with. 67% of people who get covid are getting POTS. You can get it from other conditions and viruses as well as PTSD. I have Epstein Barr and hEDS. Both of these cause pots. So far I've found three causes and I also had covid so that makes 4. I have some symptoms that I'm not sure what they are caused from, but I only have an understanding of POTS. Its hard to find a doctor to explain to you what symptoms are caused by a particular condition when you have several different ones. Im guessing it's probably more likely that perhaps you have another undiagnosed condition as well as ET. You can always seek out a second opinion from another specialist. They can tell you if your doctor was mistaken about your bloodwork. If a second doctor confirms your diagnosis then it's time to figure out what else is going on. I'm finally jumping through the hoops to prove I'm not just mentally ill. This diagnosis is a huge part of the reason people are finally taking me seriously. Pretty sad you have to get blood cancer before anyone believes you.
How are you doing today?
currently in the rabbit hole
The ET Underground.
Only one video? Are you still alive?