Good Morning, My name is Penny, I will be 60 in march, and I am from Texas. I came across this forum about 4 yrs ago, but did not for some reason have the guts to write. Now Im back because as I get older and am still trying to deal with essential thrombocytosis....I find myself needing to find others with the same disease. I am also very glad all of you are british, mostly. I love your country and wish I lived there!! Anyway.....I was diagnosed with ET in 2007. I take Hydroxyurea 500 mg. 2 capsules a day. As the years have passed I have just tried to deal with different symptoms, which my hematologist/oncologist just look at me funny and say..your platelets are where they should be, i dont know why you feel that way! UGH!!! Im so sick of hearing that. I think its the medicine and condition, and that it is so rare doctors dont really know much about it. Sometimes I just want to run away and hide I feelso bad. Life wont let me. I live alone with my dog Lexi. God and Lexi and my two wonderful boys are really all I have. Sometimes I do get lonely and afraid but God has always provided for me. Im just having a really bad time right now. I recently left a town to be closer to my boys which I felt it was time to do. I live with my sister-in-law, my brother has passed away 5 years ago. She is great for letting me stay to start my life over AGAIN, but things arent working out. Ive been here 2 months, still no job and no home in sight. Rent here is so high, wages low, between feeling yucky, anxiety, and just almost hopeless, I feel so alone. My condition, arthritis, scoliosis, neck pain, age, just constant struggling with overall not feeling well, and trying to make it on my own is just getting too much. I constantly remind myself....God has this....he knows my health, my situation, my loneliness, and all of it. I just find myself getting TIRED!!! But life just stinks all the way around. I feel that if I didnt have ET and all the crap that come with it, maybe i would have the strength to not feel this way. I pray daily, that I will find a job that my body will let me do. Im all alone and struggling, but I know I have God on my side and Lexi. She needs me! I just dont know what to do or where to turn anymore. Thirteen years of this constant anoying illness that creeps up out of know where and makes me feel bad at times. I have had to walk out of the grocery store or just leave work and drive home and lie down for a while. People look at me, (including doctors) like Im stupid for trying to explain how I feel and they have no answers. BTW Im also Jak2 positive. My own children and my sister in law doesnt get it!!!! And still here I am, no choice but to struggle on. I wish I had just ONE day to wake up and feel good again!! Im not saying everyday is like this it isnt. Just it comes out of the blue, you never know when it will strike. Do any of you have this? Its just an all over yucky feeling that comes over you suddenly. Ive done this for so long now, I can feel it start. I struggle with this so much, IM sooooooo tired!!! Im sorry this was so long, any response is appreciated. Thank you for reading!! God Bless you and yours!!
It's been a long time......: Good Morning, My name... - MPN Voice
It's been a long time......
Hello there. I'm so sorry you are struggling right now. I'm very new to things, but what led me to my diagnosis of PV was severe fatigue. It is not your fault or in your head.
Thank you Lena, I appreciate your kind response. It just overwhelming me.
Hi, sugar bear 56, I feel like we are in a similar situation. I was diagnosed in 2008 with ET Jak2 positive at age 52. I think it’s time for you to see an MPN specialist. Last year my condition seemed to worsen. I was feeling extra fatigued and I could barely hold my head up during the day and my doctor said the same thing to me. I became anemic and my platelets were over 700 and he couldn’t seem to figure out the problem. So, because of the site, I decided to see a mpn specialist, and and she prescribed another bone marrow biopsy, And ultrasound, and extensive lab work. I had progressed to Myleofibrosis which I found out in September. My new doctor is phenomenal and brilliant. I started seeing her on a weekly basis for the last four months and she finally got me stabilized and last week she told me I don’t have to come back for a month. I have more energy and feel like I got my life back.
I went on mpn connect and that’s how I found her. So that is my advice to you. I suspected Myleofibrosis, but my previous hematologist, I feel, had reached the end of his expertise. Let us know how it goes.
Cindy
Thank you Cindy, I will look into that. God Bless!
Hi. You need to find another haematologist, ideally an MPN specialist. Treating someone with an MPN is about more than getting your platelets and other blood parameters within the normal range.
The hydroxy and the condition can make you feel tired but other factors such as low vitamin D, low B12 and hypothyroidism could be in play. Finding a sympathetic and knowledgeable doctor is your first step. I think there are members on this forum who can help you find someone suitable in your part of the USA.
Thank you so much!
Try this link.
Thank you i will look at it.
Hi sugarbear56, really sorry to hear you feel the way you do at the moment. I'm sure we all get these moments when low mood creep into our lives. You sound like you have a strong faith and also the love of your dog Lexi. Do you have someone close you can talk too? I also think you need to see a more understanding Haematologist and not someone who dismisses all your symptoms out of hand. Hope things improve for you. Atb.tina.🤗
Thank you tina, I do have my son but they do not understand, and i dont want them to feel helpless. I will look into a specialist in this disease.
Hi Penny
Your post really touched me, for some people this condition can be a lonely path even when they have someone to talk to, but when you don’t have anyone to talk to and you’re feeling particularly unwell, it can start to affect your mental wellbeing.
So along with what others have said, I think your first port of call is to find a specialist or at least a sympathetic haematologist, and maybe even ask them if they know of groups near you that you could join for support.
Coming on this forum is a great thing to do as there is always someone come night or day, ready to answer a post and let you know you are not alone.
Although I don’t come on here as much as I did when I was first diagnosed, mainly because I moved house to an area where internet connection is somewhat hit an miss! I value this forum as a lifeline and some very wonderful people have helped me so much on here, I’ve spoken to people on here in the dead of night, when I’ve felt quite alone (even though I have a supportive family) and I’ve gone to bed feeling so much better.
So you’ve done the right thing posting on here.
You can even ask our lovely Maz the forums Administrator, about having a buddy, someone to chat to.
I really hope you find a good dr, and start to feel better very soon. 👍
Don’t forget we are all here to support each other on good or bad days, or just to find out any latest news on treatments etc. It’s all here on here Penny, even reading people’s past posts can be Of comfort, or great interest, I’ve learned so much just from reading old posts!
Oh and to answer your question, Yes, I have horrible yuk feeling days, just creep up out of nowhere, I call them ‘fatigue bombs’! Sometimes last for a week even though bloods all look good, and I drink lots of water, I walk a lot, and eat healthy foods! My haematologist says just because the bloods are saying ‘normal’ the condition is still there, and can still have an effect on us!
I have PV but I believe symptoms can be the same for all MPNs.
Best wishes
Jacqui 🤗
Jacqui, Your response has touched me very deep. I appreciate what you have said more than you know. You have made my day already. Thank you so very much , you are the only one who directly answered my question and I feel better at least for now. God Bless you!
Hey sugarbear56, so sorry to read your letter, I have had this disease for 20 years and it has certainly been up and down. There are some good people with sound advice on this site. I can only wish that your situation improves and you find some respite and peace, take care
Thank you Bob...for your touching reply, I do so appreciate it. Peace would be good! God Bless!
Hi My name is Judi and I was recently diagnosed with ET/JAK2--I am 71 so I feel blessed that I am this old and just getting diagnosed. I did look at my previous blood tests and looks like it started about 6 years ago. My platelets are at 487 and they want me to go on hydrea when they hit 500 but I'm looking for alternatives. I am so sorry you never feel well. I have symptoms too but really not so bad that it affects my quality of life, but who knows what the future will bring. I was wondering if you are trying to exercise which I do three times a week and I find it helps with my strength and energy. I'm also trying a mindful class and trying to stay very busy so as not to get depressed. I am so happy you have God in your life because He will never leave you so keep trusting in HIm and just keep trying--don't give up. Anytime you need to talk, I am here for you.
God bless you sugarbear. Judi
Aw ty Judy for your heartfelt reply . it's nice to know someone that relates is out there. I'm just so tired, I will try your advice. God bless!
Sorry to hear about your current struggles. Dealing with the impact of a MPN can be quite challenging. Often others do not get the real impact, particularly of the constitutional symptoms that can accompany a MPN. Unfortunately, many docs, even hematologists, do not have much experience with MPNs. Many lack the KSAs to provide individualized care for MPNs. Here is a great presentation about individualized care
youtube.com/watch?v=Y50S-Uz...
Given that you are JAK2 positive, please look into the link between this mutation and inflammation. In addition to driving hematopoiesis (making blood cells), the JAK-STAT pathway drives the production of inflammatory cytokines. The overproduction of these cytokines is thought to be linked to many of the secondary symptoms people with the JAK2 mutation experience. Systemic inflammation is a significant issue and is important to deal with.
It would be interests to consult with a MPN expert. You are fortunate to live in Texas as there are a number of MPN experts based there. (Note: Dr. Mesa is based in Texas). Here is a list of MPN experts mpnforum.com/list-hem./ . Do whatever it takes to get to see a doc with MPN expertise - it can make a big difference.
Meanwhile, do know that you are not alone. Hopefully this forum will become a part of your support system. It helps many of us.
Thoughts and prayers headed your way.
Thank you Hunter for replying. I will look into this! God bless!
Hi Sugarbear!
I hear you all the way over in Austria and everyone in England gets you too. I’ve had ET CALR for 10 years. I’m pushing 55. I sounded like you for years until my diagnosis 2.5 yrs ago. My doctor got me on the autoimmune paleo diet, I cleaned up all toxins in my home, got rid of all soaps and cosmetics and cleaners that weren’t organic. I take supplements to bring my body back into balance. You need knowledgable doctors to lead you in this and diet.
Your doctors are not sensitive or knowledgeable about the person they are treating, but only the illness. I kept changing doctors until I found the right one (#5).
Changing homes, etc is a huge deal. Looking for a job is a huge deal. I understand you and it’s completely normal to feel as you do. I’m so happy that you are in our Lord’s hands. Pray he will send you the right doctors and information.
For energy, clean out all chemicals, pesticides, hormones, produced foods!!! Eat whole foods, get rid of all GMOs. It’s a long process. Get your nutrients, vit d, selenium, magnesium, B vitamins and zinc settled. Take CoQ10. All these in natural form. No synthetic vitamins. They don’t get absorbed properly. CoQ10 is an energy life saver!
I will pray for you, Sugarbear. Stick to this forum. We are a fine group of lovely, supportive people, who are all like you! We’re just a click away! 🙏🏻 Anag
Wow, this seems difficult and expensive, but when i get settled I will try what you are saying and I pray I feel something, like better! Thank you so much for replying and I will stay in here this time, just knowing im not alone and reading the replys have made me feel somewhat better already!! God Bless you and anymore advice would be appreciated more than you know!
😁
Hi Sugarbear! Your post really touched me and I hope that your decision to write on this Forum has helped both with advice and companionship. This is a lifeline when we are feeling low and fatigued when we can share our thoughts and feelings. I see that you, like me, take shelter in your faith in God. It sure helps. I was diagnosed with ET -JAK 2 + In April 2018 and have appointments regularly at my Haematology Department. These have varied since my diagnosis and BMB as the Specialist I originally saw left and I saw a series of Nurses and one unhelpful Doctor. I have now managed to see a Dr the last twice who is familiar with MPN's and will see her again on 20th February. Keep posting on here and hope you feel much better soon if you can find a good Haematologist. God Bless, regards, Fran
Thank you grab for your uplifting kind words, I appreciate all the help and prayers I can get. God bless you!
Sorry spellcheck....Fran
Hi sugar bear56. Sorry you are going through such a hard time. This condition doesn’t seem to play by normal rules. Bloods can be good but yet we still feel yuk. Please be kind to yourself. You sound like you are being so brave in the face of taking on quite a lot of change. Keep posting and thank goodness for dogs - they do enrich lives every day. Jacquie x
Not what you're looking for?
You may also like...
it's nearly been a year
ET & Long Haul Flights
First time on Hydroxyurea
How long has everyone had their mpn?
ET long term concerns
High platelets and long flights
Long term lansoprazole use
