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Newly diagnosed sick or just a big moaner

Hi all, I was diagnosed with ET at the end of February 2019. I've had 6-7 years of chronic headaches. I went to G.P and was told I had Sinusitis for years. Went on to develop dizzy spells, hearing problems, even went blind on occasions, then told it was Eustachian Tube Dysfunction.

I don't know if it has any connection but in 2015 my left arm and hand went into a cramp and I didn't regain full function for about 2 years. At the time had blood tests but told everything was fine. In 2016 or 17 went to hospital with chest pains, they investigated me for breast cancer and took bloods, again told everything was fine. Throughout I've been fatigued and had soreness and colour changes to my toes. infrequent electrical type shocks in fingers and toes. However I've never missed work due to my symptoms. At the end of 2018 I had a really bad cold, knocked me sideways but went to work. Then January had water infection, then days later another virus. G.P took bloods, then next day the balloon went up. Sent to hospital told platelets were 1587 and on 28th diagnosed with ET. Apparently my previous blood counts had been very high, but it hadn't been raised as a concern. Initially prescribed 500mg Hydroxycarbamide but only reduced platelets to 1416 so upped to 1000 daily. The last count was 767 so upped dose Saturday and Sunday to 1500mg. From going on tablets developed joint and muscle pain In both legs. My feet got worse diagnosed with secondary Erythromelalgia. I've also had a severe bout of tonsillitis. The consultant put me on Aspirin about 3 weeks ago. I do have a CNS nurse at my appointments but she's never really given me any input about what to expect. She did seem to suggest that I should be well enough to return to work, so on the 11th of this month I went back on phased return. Started 3 hours on Thursday by Friday developed muscle pain in both legs. Was absolutely shattered over the weekend, on Monday had to do 4 hours and by Tuesday felt ready to collapse. Called the CNS nurse who said ideally want the count to be 150-400 and that fatigue was the most common symptom, so I should be off work. I wish she'd clarified that before. Spoke to G.P today and got new sicknote till 1st of next month. I really don't feel I have been given any real idea of what to expect. I got the feeling that the G.P and CNS nurse thought being on the meds for a month or so should resolve my symptoms and I should continue life and work as normal. My consultants letters actually say I'm feeling a lot better, which I've never said. I feel a bit hung out to dry really. No guidance no direction. Now so tired just want to cry, headaches daily. The slightest knock to my toes and I experience intense nerve pain. Hot and cold through the day, wake during the night due to hot sweats. I'm terrified I won't be able to maintain full-time work again. I was due to have a BMB but they identified JAK2 mutation from the blood tests so cancelled. I haven't really got a clue what's going on, it's like the blind leading the blind. I'd really like to know where my blood count and symptoms rate in the scheme of things. A lot of people talk about blood counts being in the 10's of thousands. Is mine low medium, I don't know. Am I just a big moaner?

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Hi

You are having a hard time and you don't appear to be getting the support you need..

I am ET Jak 2 + and MF I recognise some of your symptoms all too well...

Personally I think you need some clarification on how you stand, you need to get straight answers from your CNS, ask your Consultant to explain things in more detail that you can understand..

For me I still had the BMB which clarified things further for me...

I assume you were given the handbook on ET, read up on Essential Thrombocytopenia...

I was diagnosed last year and like you I was shocked, feeling unwell and knowing very little about ET..

I bought a book especially for the job in hand and created a long list of questions for my Haematologist.

I numbered each question and left plenty of space for the reply from Haematologist..

I ticked them off as I went through the list, as it's so easy to become distracted whilst listening to what the Haematologist has to say...

Don't worry about the time element, you deserve to get as much information from your Doctor and understand what is happening..

MPN's are very rare and ideally it is advantageous to have a Haematologist who has specialised in MPN's..

Sadly our GP's tend to know very little about MPN's in general..

My GP put his hands in the air and said, " way above my pay grade"..

It is very specialised work whatever

type we have...

I had literally just retired from nursing within the hospital environment, I knew absolutely nothing of this condition...

I'm still learning all the time, there is a wealth of information on this wonderful Forum and I'm sure you will receive good advice...

Ensure you drink at least 3 to 4 litres of water daily...

It helps to flush the toxins of Hydroxycarbamide out and for many folk it helps with fatigue...

Remember this is Your Body and you deserve to know as much as possible as to what is happening to you...

I find my notebook invaluable and I take it along to all appointments, and I ask my questions!

I hope things start to settle for you, once you understand it all better and know your capabilities or limitations whichever way you look at it, you will know what you are dealing with...

Try to stay positive, easy to say I know, you have certainly had a very difficult time..

Good Luck and All the Best

Mary..

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Thanks a lot for replying. I see the consultant again on Thursday 25th so hopefully I'll get a few more answers. I currently feel so tired it's hard to formulate my thoughts never mind ask cogent questions.

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Do u mind to advise how old are you

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I'm 54 in September, I'm a mum of 2 and a nana of a boy and girl.

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Hi, I hope you find a good Doctor. I have had several and am still looking. I have had ET for about 7 years and if any symptoms are not in the books my Doctors have said these symptoms are not ET. I was under the impression that I was just lazy, and a bit of a drama queen. Since I found this site my self esteem has improved greatly. I wish you the best of luck in finding a good Doctor.

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Thank you for the support.

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I’m not surprised you feel unwell! Aside from the symptoms of ET, the time of diagnosis can also be a very stressful period. It sounds like you don’t feel very well supported and informed by your haem team. Take a look at the MPN Voice website if you haven’t already. Make a list of questions and concerns you have (do it slowly, almost everyone here will have experience of that dense ‘brain fog’ you describe) and take a trusted friend / partner with you to your next haem visit. And do remember that not every ill or pain you have will be directly related to your ET and it’s always worth getting symptoms and concerns checked out. However, the ET may impact on how other illnesses or issues affect you and how you deal with them. Fingers crossed the meds will continue to kick in and your platelet count will continue to decrease. In time you should begin to feel better and certainly with the lower counts be less at risk of serious health complications. But even in the 700s your platelets are way too high. The objective will be to get them within normal range and keep them there. ET is a chronic condition and although they have been enormous advancements in the understanding and management of MPNs there isn’t yet a cure. Keep us posted.

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Thank you much appreciated.

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Hello,

You did not say what type of work you do? I am starting to sound like a broken old record but I encourage anyone with so many unspecified symptoms like yours to look into your diet? You may already be eating healthy or believe yourself to be eating healthy but there could still be room for improvement. Improving your diet and lifestyle is the easiest, cheapest and side-effect free first line of treatment. I was diagnosed with ET JAK2+ in 2016 at age of 60 and ever since then I have been looking into diets and exercise on an ongoing basis. Food and diet is not as simple as we may have been let to believe. I feel amazingly well in spite of 9xHU + aspirin. I read a lot of health related publications. My current book is "Radical Remission" by Kelly Turner. It is about people who managed to cure their cancer without conventional treatment.

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You are NOT a moaner! My blood counts have never been over 600K, I am triple negative, confirmed ET by bone marrow biopsy. Have had elevated platelets for over 10 years. No one said a word until extreme fatigue came along. I am only working 5 hours per day 3 days a week and put in for medical retirement. I am in US and work for the government. It takes a YEAR for processing! I have headaches, severe fatigue, bone pain, etc. It is all real and no one understands when you tell them you feel you are walking around with cement shoes on. Take care!

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Dear Smile61

I also am in the US and was diagnosed Nov 2017 after a heart attack at 58 with a platelet count of 1M. By January 2018 I reduced my working hours to 15-20 hours per week. I am now 60 and feel so fatigued at times I wondered if I could apply for SSDI. Can you still be working part time when you apply?

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If I couldn't work entitled 6 months full pay, 6 months half pay, then would have to claim sickness benefit. I have an income protection policy, so if it actually paid out would get around £230pwk. Private pensions are taken into account for sickness benefits so would get around £37.50pwk. It's a lot less than I get now, so quite depressing. Also pension would end at age 60 and in UK we have to work till 67. So once the pension ended sickness benefit would be paid in full. Currently if in the support group and after 13 weeks I would get about £127.50pwk. At the moment I wouldn't expect to qualify for a disability benefit as it's based on your daily living and mobility needs. I'm a disability rights specialist and knowing the criteria, I can't see how I would fit the descriptors. It's a long 13 years ahead. Thanks for your advice.

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Hello Yorkstyke, welcome to our forum, and no, you are not a moaner, you are someone who is feeling unwell, and we all understand. These symptoms are awful, and have a massive effect on your quality of life, and many of the people on this forum have had these symptoms in varying degrees, it can be so distressing. I would advise that you read as much as you can on our website mpnvoice.org.uk and agree with Mary, write down your questions and don't be afraid to ask your consultant and nurse for answers, they are the people who should be telling you about your MPN. With regards to work, it might help to speak to your employer and explain how your ET makes you feel and that there will be times when you won't be able to function properly, and ask if they will make concessions for you, they should do, this information on our website might help

mpnvoice.org.uk/living-with...

Best wishes, Maz

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Thank you for replying, it helps a lot.

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Hi yorkstyke, well first let me reassure you that you are not a moaner and a lot of the symptoms you describe especially the symptoms you mention before being diagnosed are something a lot of us on here relate too. I've had etjak2 for 11yrs and reading your initial symptoms of colour changes to your toes and even episodes of going temporary blind were frightening and bewildering to say the least. I have had 2 strokes in that time, a small one just before diagnosis. At present i am experiencing some symptoms reminiscent of before diagnosis something which is very scary. I see an mpn specialist at my new hospital wednesday after finally getting frustrated of unanswered questions and never in all that time of managing to stabilize my platelet counts which were and still sometimes mirror your counts which are certainly very high and not meduim as you ask. When you see platelets in th e 10s of thousands,you knock a few noughts off, ie, 10,000 is actually a platelet count of 1,000 if that makes sense. A normal count should ideally be around 150- 450 varying at some laboratories. My advice to you would be to have a more indepth talk with your cns or if possible your haematologist and tell them exactly how you feel and how it is effecting your day to day life,afterall if our quality of life is being compromised in anyway,it will lead to other problems like depression. You are lucky in that you have found this site in the early days as you will find a lot of support here and will get help you with any questions your have. Sending you very good wishes and plenty of hugs.tina,xx.🤗

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Thank you for replying. I have felt very flat mentally and lack energy and motivation. Luckily I have kids and grandkids so haven't allowed myself to completely fall into a pit of despair.

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Hi,that is defenitely to be expected so don't beat yourself up. I don't think anyone on here would say anything different in how they felt in the beginning. Some feel relief,some just as you,mentally exhausted. You are doing the right thing in concentrating on your kids and grandchildren,it will help you,it helps me. I had a young daughter when diagnosed 11yrs ago and now have a grandson 3 and granddaughter 7months old. Take your time and let everything sink in and find as much reliable information on mpn's as you can and don't bother with google which a lot of it is out of date. Anything you want to ask or just a symphathetic ear, we are here,do not feel alone. tina,xx.🤗

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Hello Yorkstyke

I echo what others have said, you're definitely not a moaner! I was diagnosed with ET JAK2+ last May, and when the medics checked my records, they show a too high platelet count going back for over 15 years, but no one noticed its relevance until we had a new GP arrive at our surgery who immediately sent me for further tests. I've been on just a baby aspirin every day up until a couple of weeks ago, when at my latest trip to the Consultant the platelets have risen again so I'm on 500mg of Hydroxycarbamide a day for now, and go back to the Consultant in a few weeks time to see what effect the meds have had. I was in a state of shock when I was first diagnosed, but have found this forum and MPN Voice an excellent place to find support and clear information about MPNs. Macmillan also have an excellent booklet on ET which I was given when diagnosed. I take my questions on paper when I see my Consultant, which has really helped me. Sending my best wishes to you, and hoping you'll be given good and clear information at your next consultation. The shock has settled for me now, and I pray it will for you too as you learn more about the way forward.

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Thank you for your comments. Strangely enough I wasn't really upset by the diagnosis. Initially I was worried it was leukemia as we have a family history of this. I was fearful about the repercussions for my kids if it had been leukemia, so when they diagnosed ET, I felt like I'd dodged a bullet. I'm still thankful it's not familial, but obviously MPN isn't really a consolation prize. All the best.

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We also have very good booklets on MPNs and all the different medications used to treat them, you can read and download them from our website or I can post them out to people, just email me at maz.cd@mpnvoice.org.uk with your request and address.

mpnvoice.org.uk/about-mpns/...

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Thank you, I've picked up a few booklets from the clinic and looked at some links sent on this site. They do explain the condition, but don't really go into details about where I am now. For instance having treatment but still experiencing significant symptoms. They assume you will respond to the medications fairly quickly.

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So sorry to hear about your health problems. You have suffered severely. I am 61 yrs old and diagnosed with ET last year. on Hydroxycarbamide 2 tabs x4 weekly and 1 x3. I have stayed well on the medication. Your levels are significant and like you, my doctor likes platelets to be around 400 or ideally less.

I have not had headaches or your muscles cramps so these are very unpleasant. Hope you can get much more help via MPN forums and support networks. You are right to take time off work. Please don't feel you have made a fuss over nothing, you have coped so well with enormous levels of worry and stress .

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Thanks for the support

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You are not a moaner. The symptoms you describe would be troubling to any sane person. Too bad that your current providers seem so ill equipped to give you the help you need. Even many hematologists lack the knowledge to treat MPNs. As others have stated, these are rare disorders and most docs do not have the expertise to treat. It is vital for your care to find a physician who has the expertise needed regarding MPNs. It is worth traveling a considerable distance to find the right doc. What I did was find a true MPN expert (Director of a MPN Clinic at a top-line hospital) who now serves as a consultant. I changed hematologists to one who specializes more in blood disorders. I liked the old hematologist, but he removed himself from my case and referred me when it was clear he did not have the expertise needed. I found the MPN expert on this list of patient-recommended doctors mpnforum.com/list-hem/ . I found that I had to be clear, assertive and unrelenting to get the care I need and deserve. I think that as patients, we need to NOT be patient with s system of care that is not responding to our needs. You deserve a high quality of care provided by physicians/nurses who take you symptoms seriously and are committed to providing you with state-of-the-art treatment that makes you feel better. I hope this is what you find for yourself. All the best.

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Thank you, dont think there are too many options in terms of choosing physicians on the NHS. Although I am under The Bexley Wing in Leeds, which specializes in cancers.

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That lack of choice is a fundamental flaw in many systems of care. It saves the system money, but comes as the cost of quality of care for patients. I learned the hard way that you can't just accept flawed care. You have to advocate for what you need and refuse to accept sub-standard care. Patients who advocate for themselves get better care than those who just accept the system as it is. I hope you are able to tackle the system of care you are in and get what you need. You deserve to get the best possible treatment. I hope you succeed in getting it.

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Thanks for the input.

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You are just starting your journey which I began over 11 years ago. It’s terrible that it took so long to notice your high platelet count. I agree with the others. You need to find a good hematologist or MPN specialist. Your platelets and your other numbers will vary over the years and in meds will be adjusted over the years. I hope with treatment but your condition improves.

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Thanks so much for the support.

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Hello Yorkstyke - welcome to this fabulous bunch of people. I guess we are all here for the same reason and that is to get information and support, share our hopes and fears and give hope to those in need...... I echo everything said so far so won't repeat it but may I ask what are of the country you are in?

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Hi, im in the UK, Leeds, Yorkshire, land of the Brontes. Thanks for the comments.

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Hi,

You sound to be quite financially savvy. Do you have a critical illness policy? If so, you should be able to make a claim on this as ET is classed as a cancer.

Best wishes

Judy

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Unfortunately only income protection policy. Pays out if unable to do my normal job. I'm a Welfare Rights Officer, so usually sorting out benefits for others. Thanks for commenting.

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mmmm I was hoping you were in reach of Birmingham as one of Europe's leading ET specialists practices there - Prem Mahendra.

So, two things - ask to see another Haematologist for another opinion as 'blood' is such a HUUUUGE topic there are Haematologists that specialise in this area and there are others that just treat it.

Secondly read this link: rarediseases.org/rare-disea...

It is not too technical but puts it all in a nutshell so to speak.

Thirdly...... stay positive, your days will get better.

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My initial consultant was a Dr Khan, super nice. He predicted ET before my diagnosis. I saw he'd put it on the blood sample request slip, but didn't know what it stood for. I've seen 3 different doctors now at my appointments, he was the nicest.

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mmmm forget 'nice' was he 'effective'? Get your list of questions as others advise then get another opinion. Doctors are only human and good ones welcome others getting involved to share expertise and develop opinions and options.

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Hiya, I only saw him once prior to diagnosis. I'm under NHS not Harley Street, switching doctors isn't an option unless I win the lottery. I'll try and think off some questions for my next appt. See how it goes, ta.

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Hello - yes you can choose which consultant you see and which hospital you attend. Many NHS hospitals 'buy' servies from private hospitals. Read the attached leaflet that tells you what you can choose and how to do it. Happy Easter!!

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Ta

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Yorkstyke,

you're not a big moaner. MPN's affect all of us differently and with different symptoms from day to day. Sometimes they last for weeks other times just a day,

I do know that when I get sick, with a the flu for example, I am wiped out a lot more. I also go through wild swings on my red blood cell count, I have PV.

It will take some time for your body to adjust to the meds and get your platlets under control. If you don't have this it is hard to understand why you feel the way you do. Hang in there and stay hydrated, that's my advice.

Regretabley, mnay doctors don't understand MPN's at all.

John B

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Thanks for the support.

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Hi Yorkstyke!

Im so sorry you’ve been through so much. I was called a moaner for years by my husband. Ran from Dr. to Dr. Nothing but treating symptoms. I was finally diagnosed 7 years after my thrombos started to rise. I was at 750 and my internist said, oh, it’s just some infection. My third TIA, was once again diagnosed as the slipped disc in my neck. I told my husband to bring me to the hospital. 4 doctors. No one could find anything. My husband kept rolling his eyes to the doctors. They were suspicious but couldn’t find anything. They just didn’t get it. I asked for a blood test and I was at 823 thrombos! Bingo. I was immediately put on aspirin. I can’t believe you were not put on Aspirin right away, being much over a million thrombos! Well, within two weeks, I was properly diagnosed with ET CALR mutation and was put on Anagrelid. This med was the only alternative for me. It did make me weaker and it caused a strong beating heart. Once i spread the pills out over the day, i was ok. It took me a few months to get over the tears, fears and terror at every symptom. It all felt surreal and I felt so unsure of everything. I was 52, had just finished my masters in edu and was burning to go to work. I’ll finally be able to start in the fall at 54. My tips to you: Educate yourself. do good research regarding your health and ET. Get to know your body really well. Your knowledge is your biggest asset, but go step at a time, else it will burden you. Get a good hematologist, who will answer ALL your questions and support you. Mine tried to keep my thrombos around 550. Also, get a good supporting alternative doctor to bring your body in balance. They’ll make sure your vit. Minerals, amino acids, etc are where they should be. study all foods that are good or contraindicative for ET. Organize time in a way that you can take breaks throughout the day, before you get tired. Get rid of all environmental assaults on your body (food, chemicals, pesticides, cigarettes, alcohol, stressors, bad air, poor quality water, etc.). Drink lots of water. Sleep well. Meditate. Try to get away from meds for headaches, etc. Go alternative to keep the chemical burden as low as possible. I take CoQ10 to keep my mitochondria working better. It’s a great and safe energy booster. Finally, enjoy everything you have in your life. It’s the best medicine. We all got through the initial shock and we are doing well. This forum is full of great people, who support each other in every way! Welcome! We‘ll help you whenever you need Info or just someone to talk to. Take one step at a time. You’ll be fine! Happy Easter!

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Thank you for replying. It sounds like you've had a really horrendous experience. Puts mine in perspective.

I couldn't go on Aspirin immediately because it can trigger von Willebrand disease if your platelets are over 1000. It causes bleeding in the joints. They put me on Aspirin at my last appt.

Take care.

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I just wanted to let you know, many of us have been through a lot. You are definitely not alone and you’re not crazy. There was a reason for all of this. Things will get better. You will learn to embrace your situation and live well! : )

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Thanks a lot.

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You’ve been through an awful ordeal. Hopefully you will feel a little better with all the replies you’ve had.

The sooner you attend an mpn forum the better. You will get enormous support.

Love and hugs

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Thanks for the support.

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I had sinus infection for many years. Had a head scan and I had a deviated septum. Had operation in Jan 2013. My platelets started rising from November 2013. From then I had low iron and still the headaches continued. In August 2018 I had a full blood count. October 2018 the Consultant said I had Et. After many blood test it was confirmed I had Cal-D. So I’ve been on Hrodoxy 10OO over 5 months. My headaches calmed. But now I think I have another sinus infection again as headaches back again. I also have migraines. Weird how my Et started in the same year as my nose operation. All a mystery to me.

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Thanks for the reply. I'm still using my nose spray for my sinuses. Not sure if it's helping, but the pains so bad prepared to try anything.

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You need to see your doctor. You may need antibiotics.

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Hiya, just finished a 10 day course for tonsillitis. I'm taking the spray for the inflamation caused by the MPN. I no longer think it's a separate condition. Get dizzy a lot and have rushing sounds in my head. It seems to go more with MPN. Was seeing G.P for years for sinus problems, it's not an infection.

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I think you can only take nasal sprays for a few days. I use a saline spray and nasal strips. ( for sleeping) They really open up the airways. Is nasal congestion a symptom of et?

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Hiya, I have pressure pain in forehead, above my eyes, in the left side of my head. Though can have it in the right. I get a dry, burning feeling in nasal passages. My nose is clear. Do get nose bleeds few days a week, but doesn't run, it's just when I blow my nose. Used spray on and off for years. Only recently started again after 4-5 months.

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Oh you poor thing.

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Nasal sprays give me bad nosebleeds except for the saline. I get frequent headaches, too which I’m sure are related to my ET and PV. I wake up with one nearly every day, so I feel your pain. Sometimes they go away on their own and other times, they last all day.

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I’m so sorry to hear what you are going through. I was diagnosed with ET Jak2 positive 11 years ago and PV 3 years ago. At the beginning of my diagnosis, I didn’t realize that my dizziness and fatigue were caused by this disease. I also had heart palpitations all the time and went to see a cardiologist. They found “nothing” wrong. When I found this site, I realized that all my symptoms are either side effects of the disease or the medication. I concur with the others, you need to find a good hemotologist. Your treatment may change over the years and you will have good days and bad days.

Good luck and feel better.

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Thank you, I thought many of my symptoms were just minor irritations and felt daft telling the G.P about them. The cumulative effect was shocking, but on there own many hardly seemed worth mentioning.

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You are certainly not daft. We are all experiencing similar symptoms and there are still so many questions. I get the rushing sounds, as well. Mine are in rhythm with my heartbeat. They started after my hemo increased my dosage of Jakafi. Next time I see him, I will mention it.

Hope you find some relief soon.

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Cheers

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