Hi everyone, my name is Christina. I found your forum 3 days ago and am very impressed at how helpful and supportive everyone is to each other... so I felt it time to properly introduce myself.
I'm 50 years of age and diagnosed 3 months ago with ET, and early stage MF. My platelets are 673 and I am currently being treated with aspirin therapy, folic acid and B12. My hematologist has referred me to an ET research hematologist at Columbia hospital in NYC I have an appointment set for next week. I'm hoping this specialist will be able to give me a clearer picture of what symptoms are connected to ET, my current status, treatment ideas and prognosis.
The question I want to pose is :What symptoms have you had? I'm trying to figure out what is related to the ET and what isn't
I've experienced a number of odd symptoms that seem unrelated, yet when viewing past conversation threads here it seems that my experience is similar
Dibilitating fatigue & brain fog (both improved a bit with aspirin)
Random hearing and vision issues
Random swelling of an ankle or just one finger
Gastrointestinal issues that seem to have improved since starting the aspirin
Optical migraines
Numbness/tingling/cold sensitivity/joint stiffness in my feet and hands
Anyone else??
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Cmg5935
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Hi Christina, welcome to our forum. Very pleased that you have found our forum and that it is helping you, you are in the right place for information and support. If you haven't had a look at our website yet mpnvoice.org.uk then I would suggest that you do, there is lots of information on there and very informative videos to watch. Best wishes, Maz
Hello Christina, and a very warm welcome to our forum.
I only found out I had ET after a random blood test revealed a high platelet count of 500. I take aspirin and Hydea, because I'm over 60 years of age. I have no other health issues.
In regards to your question about symptoms; I thought I was asymptomatic at diagnosis, as I put any perculier events down to the ageing process - which could still be the case in some respect?
I did suffer from annoying fatigue and I still have debilitating days - but I think there has been a mediocre improvement with the medication. I also suffered from rare episodes of visual disturbance (again, didn't associate this with ET) called 'scintillating Scotoma.' Also, my joints ached more than usual and my hands in particular were very stiff in the morning. Just uncurling my fingers from a fist was trying. Interestingly, the stiff hands has completely cleared up, my joints still ache but to a lesser extent. I also had an area in my left foot around a bone that I had broken in the past (metatarsal area) which burned uncomfortably after any prolonged standing. As soon as I started taking aspirin this improved significantly, so I know for sure that must have been related to the ET.
Hi Mary, thanks for the warm welcome. Your message definitely helps. I too had thought many of my symptoms could be due to aging and pre menopausal changes. With some relief after starting the aspirin I now feel most if not all are due to ET.
Like you my exhaustion has improved, though I have days I can't keep my eyes open. It's as if my body just shuts down.
I'm being sent to ET specialist because I'm border starting hydea and my hematologist is hoping to keep me off with other treatment.
Hi Christina welcome to the forum. This is a fantastic place for help and advise. Reading your symptoms sounds just like me. I was diagnosed with ET in Sept 16 following blood test's showed raised platelets which it turns out had been on a steady increase since 2011. I actually went on to my Gp complaining about stiffness in my fingers and discovered I have ET. My symptoms are steadily getting worse with joint pain in hands, feet and knees. Tailbone pain, fatigue,brain fog, stomach problems, visual issues and according to my family my hearing isn't great tho I don't agree ( maybe I'm in denial about that tho) more recently I have started experiencing tingling sensations in my head ,face and legs and itching when that happens. I've just recently had loads of bloods done again as my Gp and haemotologist say the aches and pains are not ET related. My Gp is convinced I have some sort of autoimmune disease but nothing showing in bloodwork to confirm that. I have been on a waiting list since dec to see a rheumatologist and still no appointment. My treatment for ET is just aspirin but my platelets are up to 1261 the highest they've ever been. Will be seeing my consultant tomorrow.
Sorry for the long post but our symptoms are so similar including the puffy ankle (forgot about that one) that I'll be interested to see what your specialist says.
I'm sure your still getting your head round your diagnoses. It took me quite a while but this forum had been so helpful .
Hey Mandy, it really is such a relief being able to compare notes with people going through the same thing. Like you my dr feels that I had the ET much longer and as a result have the mild MF.
The research I have done on my own at sites such as the NIH seem to suggest that some symptoms such as joint stiffness are related to ET. It mimics rheumatoid arthritis because of resulting inflammatory responses our bodies are having. And though we are not clotting in large veins and arteries, our smaller capillaries that feed our fingers, toes, eyes, ears and brain tissue can become blocked. Thankfully capillaries will repath themselves relieving our symptoms for a bit. I think that's why everything but fatigue seems so random. My hearing and eyesight seem to fluctuate every few days.
Thanks so much for reassuring me. It really means a lot.
I will definitely share any information I get from the ET specialist.
I have Polycythaemia (PV) but the symptoms of all MPNs are pretty similar. You have done the best thing for your condition, like me, you have joined this forum. In the midst of diagnosis and further tests, I was feeling very anxious, confused, depressed until I came on to this forum where I have had the support of many wonderful people, most of whom I have never met but they give up their time and energy to help me learn how to have control over my condition, live as normal a life as possible and picked me up when I felt down and I can't thank them enough!
I try and eat as healthy as possible but do succumb to chocolate treats, drink plenty of fluids and exercise as much as I can. Learn as much as you can about your condition, go armed with questions written down to your medical appointments and insist on answers or what you feel you need. I have become a lot more assertive now without being bolshy!
Excellent advice. I'm taking my sister to the appointment and she says we should record it so we don't miss anything.
I think I'm handling things constructively and keeping perspective. My measure stick for difficult times is longer than most I suppose.
In 4 years I have lost a sister to a rare heart condition, had another diagnosed with terminal stage IV breast cancer and yet another diagnosed with breast cancer that is now cancer free after chemo, double mastectomy and reconstruction.
This forum is especially helpful because I feel that even discussing my situation with them is just adding a burden. I'm glad to be able to speak freely here and receive informative and positive feedback.
Oh your poor family. What a time your having. You will get loads of support on this forum. Never be scared to say how you're feeling, E hugs are in abundance. I can understand why you don't want to burden your family but I'm sure you have supported them and they will support you. My hubby and daughter were very upset with me when I tried to hide my illness until I got a definite diagnosis in 2012.
Maz is brilliant, she can organise a buddy for you. Do you live in the UK? If so, there are forums taking place up and down the country, organised by Maz & Co which are a real "must" to attend. They are great for information and meeting people in the same boat face to face. There is usually a family group also which my hubby found very helpful - he got to see how other families dealt with their nearest and dearest having such rare conditions.
Thank you. It has been a difficult time for my family. It's even hard telling people what's been going on these past few years. Even I have a hard time believing it's true when I say it out loud. I can't imagine what others must think.
Though with everything I have learned to compartmentalize and just keep looking forward.
Thanks for the suggestions. I am actually in NYC, 🇺🇸. And no I did not vote for the orange Baffoon. Actually, his administration stresses me more than my illness, lol.
If you have come across any groups here in the States I'd love to know.
Hi Christina, this site will save your sanity if things get tough for you, though it does sound like you have a good hematologist. I have ET and take hydroxy and clopidogrel and have found my long list of strange symptoms like yours got longer after commencing treatment, but it's a compromise, more safety/ more symptoms? It has been very comforting for me to find out I'm not alone with all these strange symptoms and more importantly that its not all in my head. I hope you find this too. By the way, what is it, or showed up to say that you have early MF? Regards Carole ☺
Hi Carole, I appreciate your saying hi and for the further assurance. You are absolutely right that everyone here is terrific. Researching our condition is like having puzzle pieces, but no idea of what the picture is. Now I feel the picture is coming into focus and all the pieces are starting to make sense.
I am also fortunate for my hematologist because she has been willing to admit what she doesn't know and had referred me to a more knowledgeable source.
The bmb slides confirmed my MF diagnosis. The results showed changes in my bone marrow structure. I think the biopsy is the only way to diagnose the MF.
I am curious as to which symptoms you've had prior to hydroxy treatment. And I agree that if hydroxy is recommended the benefits will outway any possible side effects.
Has anyone figured out ways to deal with the random swellings. For finger I have combined elevating my hand, heat and a little extra aspirin. The ankle is swollen and itchy so I figured Benedryl would ease itching and has anti-inflammatory properties. My self logic has helped but I'd love input on this.
I have PV, diagnosed May 16, but it appears that my platelets had been on the rise over a 10 year period. At diagnosis, I didn't think I had any symptoms, but the swollen figures and joint aches, I had had, together with an occasional (and brief) visual disturbance. In fact an Xray in 2015 had shown some osteoarthritis but not excessive for my age (65)- a year into hydroxy and asprin and my joint pains have all but gone.
I too have found this site so valuable. I hope it helps you too.
Hi Bluetop, I can't begin to explain how reassuring it is to know others have had these odd random events. Just knowing there is on underlying cause and that I'm not falling apart with 6 different conditions has put my mind at ease. Makes it easier to deal with and accept.
Hi Christina, I think that I have had ET for a long time before diognosis, but I will tell you what led up to it. I took a new job which involved working in the heat and from day one started to feel unwell. This job was extremely part time, pleasant, easy, but I couldn't get use to it. After every shift it would take me days to rebalance, I became more and more ill.
Symptoms... visual migraines, full migraines, feeling like lead and being weighed down. Sometimes I would get strange patches on the inside of my legs just above the ankles. Got more and more out of breath. I never got used to the walk from the car park. Then one day after work but before I left the building, this feeling/ pressure started in my chest and crept up both sides of my neck. I was taken to hospital, suspect heart attack, it wasn't. The only thing that showed was high platelets, though no one mentioned this at the time. Some months later on a dark night after work on the way back to the car park I became disorientated and fell. This led to more blood tests and my GP picked up that the platelets had increased again. All throughout this there was also fatigue and pains in joints.
I have had to give up my little job that you could do spinning on your head with your eyes shut, that I loved.
Things that help for me, Swelling - Decleors Circulagel is great for swelling and lots of aches and pains, drinking so much water it would be easier to be a fish! This ofcourse also helps with headaches and dizziness and cool fresh air. If I'm in a warm airless situation I feel I am being crushed.
I have had a Bmb which confirmed ET and also showed some B cells lymphoma or something but they couldn't get enough of a sample to be sure of anything.
Sorry to to have been so long and boring, but fortunately I have forgotten lots of it! Ha ha 😃 take care of yourself. Carole
Hi Carole, thanks so much for sharing your story. I am sorry about your job. The fatigue does make a regular schedule difficult to keep. I have days I can't keep my eyes open.
I also have had the visual migraines as well as joint stiffness. I have not gotten rashes on my legs but rather on my chest. Though infrequent no medicated cream seems to help.
Thank you for the decleors tip. I have already ordered it online.
Thank you Christina, rashes on legs has stopped since giving up my job.Already used my trusty circular gel this morning. Hope you come to love it as much as I do,and end up using it on everything .My husband even found it soothing when his face was swollen with an ear infection. It has camphor, arnica and menthol in it, so don't get it in your eyes, it stings! Guess how I know 😂.Carole.
Hi Carole, please thank your husband for his brave contribution to science! I'll be sure to avoid eyes at all costs 😅 (Oddly enough I do occasionally have one eye just balloon upper & lower lid)
I've actually have used other Decleor products and love them. I have no doubt that the circular gel will be of great help.
Should you have any suggestions on battling the chronic fatigue I welcome them. There are times I feel narcoleptic and can't fight nodding off. I do stay very hydrated, drinking about 100 oz of water a day.
Hi Christina, Ah, the fatigue! I think this is possibley the biggest problem. People say take it easy ( while the look on their face says the opposite) ( oops, that sounds negatively bitchy!😮🤐) but all you want to do is live a normal life. Personally I have tried ignore it, that doesn't work. Work through it, that really doesn't work! Makes you ill. I'm still on a learning curve myself and always looking for tips to help and so far things that help are drinking enough water, little rests between jobs, excercise without straining the body, eg, walk the dog round the block. When I am sitting etc, paddle pumping the feet helps get the blood back up. Not over doing things.
I have ignored all these things and more this weekend because I get sick of thinking about it all the time! The payback is to great and takes to long, WHEN! will I learn,hope you have more sense than me.
Ah Carole, how right you are about the expression on people's faces when you try to help them understand how debilitating our fatigue is. My own family didn't seem to get it until the doctor gave me the two Magic words to utter... Rare and Cancer.
Suddenly whether they understood or not didn't really matter, because now somehow they at least acknowledged & respected that what I was saying was REAL , not imagined, not exaggerated.
I may still feel the exhaustion but at least I no longer feel judged as being lazy, or exaggerating. And frankly, I was my own harshest critic. Feeling like a failure for each day I could do little but give into the weight of sleep.
I like you stay hydrated. Since starting aspirin therapy I do have more days than not that I can push myself. I was prescribed stimulants to take on days I need an extra boost and have to function. And on days that I can allow my body to dictate I do, and just sleep.
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