Does anybody else feel like your clinicians think you are talking out of your backside when you tell them how ill you feel?

Hi everyone, I am Jill and was diagnosed with PV after going to my GP for 11 years with symptoms of 3 x dvt, vasculitis, overwhelming tiredness, numbness if my feet and stumbling all over the place. My blood tests have been whacko for years but no investigations ordered. During a gastric bypass my surgeon found my liver to be huge and recent scans have found my spleen is enlarged as well. On a routine follow up with the dietician I was asked if I had heard from my GP as they had written to her twice regarding concerns with my blood results. I hadn't heard a thing so after making an appointment to find out what was going on she finally referred me to Haematology where I was diagnosed with PV (Jack2 gene deformity found on blood test). Everything fell into place after all these years when I read about the illness. I am angered and worried to death that I have had this disease for so long with no treatment. Some sites say life expectancy is 3 years without treatment and 11 years approx with and then some sites say normal life expectancy if platelet level can be maintained. I have no idea if there is scarring to my bone marrow as no biopsy has taken place but having it for so many years I am sure there must be some damage after all this time with no treatment.

After 2 rounds of venous section and being prescribed hydroxycarbamide my platelet level is now within normal range so I have been transferred to the care of a specialist nurse for continuation of care but I seem to know more about my condition than she does! I had to bring my appointment forward by six weeks today because over the last couple of months everyone has seen such a dramatic change in me and I know in myself that I feel so much worse lately. I am tired beyond compare to the point that by 4 p.m. my husband is having to ask me to repeat myself as I am slurring my words. I have had to purchase a rolling walker because I am so unsteady on my feet that I am stumbling all over. Even with make up on people are commenting on my pallor. My biggest concern is how breathless I have become with such little exertion. Even reading aloud, or long conversations I can feel the effort in my chest to take in a breath. My specialist nurse today just said "I have no idea why you have these symptoms?" She has told me to drop one hydroxy tablet on a Sunday to see if that helps.

The MacMillan website "ask a nurse" forum have been brilliant and have recommended the PNDVoice website and I have learnt more through them than through the so called specialists so I recommend it to everyone suffering with any PND related condition.

I feel like I am wasting the specialist nurses' time when I see her but I just wish I could get it through to her what it is like living with this condition. Does anybody else have a hard time talking to their health specialist and actually getting them to listen?

40 Replies

  • Hi Jill, sorry to hear you have had such a terrible time and still not getting the care you need. If you go onto the MPN website and email Maz the editor, she is best placed to get the medical advice for you. I have PV and I am not a medic but I think you should still be seeing a haematologist but check with Maz. There is also a wealth of trustworthy information on that website which will help you understand your illness.

    You have done the best thing coming to this forum as you will get support here from people who understand what you are going through because they are going through it too! Keep in touch with this form as well as contacting MPN Voice website. Kindest regards Aime xx😺

  • Thank you Aime, have found this site amazing and the MPN Voice who have been fantastic with help and info. Is Maz the editor of this site?

  • Hi, yes Maz is the editor. I find the more I know myself, the more the professionals make an effort. I keep my GP up to date!x Aime 😺

  • Forgot to add that the specialist nurse I saw today said that PV should not affect the liver! I could have dropped through the floor as the liver and the spleen are the first thing to be affected. Confidence in her dropped from then onwards.

  • Oh I know, there have been several occasions my haem or nurses have said something and I have sort of "corrected" them. My GP is the best he fully admits I know more than him and asks me what I want him to do, at least he is honest. Regards Aime xx😺

  • Where are you living? It seems to me that you need to see an MPN specialist asap. I do hope you find help soon.

  • I live in Middlesbrough. I didn't know there was such a specialist, I just thought it was the haematologist that managed this condition?

  • Contact Maz (administrator) and ask for a list of MPN specialists. She will be able to help you.

    I am sure you will feel more secure after seeing one. Incidentally, you have the right to insist on a second opinion.

    (I think we have all felt at a loss when first diagnosed and most of us have learnt - in the words of NHS documents - to be the 'manager' of our own treatment even if that sounds rather presumptuous!)

    Thinking of you ......

  • Hello Jill.. I'm so sorry to read what you had to go through until you were diagnosed. To me this is a typical case of medical negligence, & I would seek legal advice or at least to make a complaint in the NHS. Because you haven't been treated for such a long time, something must have happened that makes you now having all these terrible symptoms. You need NOT to see the nurse again and you must see the haematologist ASAP! I suggest you write a journal or a list of all the symptoms you are having detailing when, where and how they happen, and take them to your specialist. Your symptoms are worrying & you need to seek help as soon as you can.

    I have a similar problem to yours. But the difference is that I have had many blood tests since 2011 & no one picked up on my steady rising platelets until I was diagnosed with ET in October 2015 following a routine blood test for a different problem. During those 4 years I had 2 strokes & I was following up with a stroke specialist until I was discharged in 2014. When I asked him why I had a stroke when I have no blood pressure, no family history, I'm reasonably fit, & I have a reasonable cholesterol reading, the answer was; "not sure, it's just bad luck", when if he'd ever bothered to look into my blood results, he could have seen the platelets and that should have been why.

    I'm now seeking legal advice for medical negligence, but if the solicitor come back and says there is no case which is in the next few weeks, I will file a complaint in the NHS. I'm now suffering with the side effects of the strokes, & now ET, all this had an impact on my life in so many ways. I wish you all the best & please keep us updated. Molly.x

  • Hi Molly, I have started the complaint process with the NHS. I emailed them at 4 p.m. on the Tuesday and we received a call at 9.02 the next morning saying they were opening an immediate investigation because of the seriousness of what had happened. They are sending a team to the clinic for a full investigation so I was well impressed at the speed. I have made contact with a solicitor and am awaiting a call back. I hate the thought of taking legal action but by their lack of action has possibly shortened my life and damaged my organs.

    Thanks everyone for your wonderful help and advice. This site has answered so many questions.

  • I hear you, you did the right thing. I do feel the same re legal action, but 10 years ago I almost lost my eye sight due to an error from the GP at the same clinic & after 3 months of internal investigation I received an apology letter, so I left it at that. Now the 2nd time round, I just couldn't leave it. Would you mind putting here the NHS email address you used?

  • Certainly Molly, the governing body for all health providers is NHS England and you can find their complaints procedure on this link:-

    Hope this helps

  • Many thanks Jill. I will certainly look into it.

  • Just heard back from solicitors Molly and they are taking on my case! Hope you have the same luck.

  • Great news Jill. All the best.:)

  • Hi Molly, had a visit from the solicitors rep 2 days ago so I could sign my consent for them to access my medical records so everything is winging its way to the solicitors. Was just told to forget about it all and they would do all the work for me.. Will let you know how it progresses. They said it could take months or years so no plans for a world cruise yet lol xx

  • As well as my ET I have a number of other problems one of which is breathlessness on doing anything. Something as simple as tying my shoes or lifting/carrying a small weight but also walking up any incline.

    Don't know if this is similar but a simple ECG would determine whether your heart is in Atrial Fubrillation, AF. Had it zapped by Cardioversion late 2014 but it has gone back out of rhythm again and being zapped again next Tuesday.

    Get your GP to get their finger out and test it. Good luck Gerard

  • Hi Gerard, your breathlessness mirrors mine exactly. Yesterday I went for the first appointment with the practice nurse at our new GP clinic and there was a note on my notes from my new doc to book in for a full cardiac check so without even seeing me this new GP seems so much on the ball. Thanks for taking the time to write on my post, everybody has been so helpful and I am going to show my hematologist all of the responses regarding breathlessness to show her I am not on my own, that this is a problem. Bless you xx

  • I am just throwing this out there - would your breathlessness (which I am really struggling with - aged 41) be as a result of iron deficiency anaemia? I know I'm mildly anaemic but my haematologist has ruled out iron supplements as it will encourage blood cell production - on HU, aspirin and warfarin, following two thrombotic episodes in last 10 years :(


  • Karol, from my reading, iron deficiency is one of the causes of ET, so how come your doctor is leaving you anaemic? Iron deficiency triggers the bone marrow to produce more platelets, and probably cause the JAK2 mutation. Something that's worth enquiring about. Molly

  • Hi Molly, it's actually the opposite of what you've suggested - an increase in iron in the body triggers the production of more blood cells, hence the concerm for clotting and my haematologist's reluctance to put me on iron.

    I saw her yesterday and unfortunately my haemoglobin had plummeted from 11 to 7.4 in less than 2 months - bit of a shocker but I'm almost relieved as the breathlessness had to be caused by something specific. So, now, until a see her in two weeks time (8-hour return journey!!) I'm on ferrograd 325mg daily.

    Fingers crossed!!! Thanks for your concern though.

    K x

  • Hi Molly, my iron levels were fine until I was diagnosed with ET jak2+ and put on Hydroxycarbamide, then a huge drop in iron levels but haem said no iron supplements because it would cause platelet level to rise x Strawb

  • They haven't commented on anemia so I am not sure. We have just had our first appointment with a new GP and have had blood taken so maybe they will pick up on something. When I explained why we were transferring they were shocked at the lack of care. My 92 year old mum is bedbound with brittle bones and COPD and we couldn't get them to come out and give her her flu jab. I had to put in an official complaint before the nurse finally come out.

  • Hi Jill, please get an appointment with an MPN specialist as soon as possible. Claire Harrison at Guys in London is the foremost in the UK. I know it's a long way to travel but she will spend good time going through you results and diagnosis and at the very lest then put you in touch with the closest qualified hemo.

    There are als two excellent doctors in manchester for MPNs. one is at The Christie Cancer hospital and the others so lady at Manchester Royal.

    That's all I know. Hope it helps.

    Also use Patient Power website and review the really helpful and informative short films there posted to inform patients of MPNs. You will see Claire Harrisn on there too. .

    There are couples f excellent facebookclosed grpups. A greats rsource. Other patents are so kind and its a great source of info.

    Best wishes

  • Thank you Jane, I would travel anywhere for the right treatment or assessment xx

  • Hi Jane, superwoman Maz has given me the name of the MPN specialist at the Freeman so seeing my GP on Friday for a referral. Hope you are well xx

  • I am in the US, diagnosed 10/15 as result of trip to the ER for headaches, chest pain and difficulty breathing. Chest xray clear, D-dime neg, EKG normal, platelets were over 1m. Referred to hematologist and diagnosed ET Jak2 +. Have been on HU for 3mos, platelets down but so is everything else, so cutting back on dosage. Still experiencing headaches and shortness of breath Dr felt this symptom should be responding to Hu by now, scheduled for lung function test tomorrow, have they done anything like this? My Dr commented on the fact that I had never, according to my records, had a cbc, in 9yrs with the same PPO. I had regular testing for cholesterol, thyroid etc but never a cbc. You would think that would be standard part of a yearly physical, I never knew they weren't doing this kind of testing.

  • Wow, you certainly went through the mill Kerri. Not had a CBC. All other blood tests okay, including thyroid. I have had 3 DVT's and vasculitis 12 years ago. My hematologist then said I think you have antiphospholypid syndrome (Hughes syndrome for short), which is sticky blood. As I was on warfarin already for the DVT's he said that as warfarin was the only thing they would use then I was to continue on it lifelong. This makes me worry that I have had this for at least 12 years with no treatment. I am childless after numerous miscarriages as well. The more I realise how much my symptoms were ignored the more angry I get.

  • I have been trying to find more info on ET and shortness of breath or hydrea and it's sign effects. Mine feels like tightness in bronchials just can't seem to breath in enough oxygean. Not anemic and pulse ox 97. Exercise intolerance, just get so warm and flush. The other forms of MPD, PV and MF are so much more serious, am I just over reacting?

  • Hi Kerri, your description of your breathlessness is exactly what I am experiencing, it just seems to take that much more effort to get enough air in! When I saw the specialist nurse she said "your levels are stable at present so I have no idea why you are breathless". This is what I mean when I say I have no faith in my specialist nurse, I honestly believe she doesn't have a clue. No, you are not being over reactive, only you can know what your body is behaving like xx

  • Had lung function test this am and for mode part everything was over 80%, with one reading at 74 but can't remember what it was. She took pulse ox as we walked out and we decided to take stairs. Drop in 02 level and bp going both up and down. Said she will note for pulmonologist. Will rx possible inhaler.

  • Hi Kerri what part of the US are you from?

  • Colorado. where are you?

  • I'm from Maryland, my Brother lives in Boulder. You have the Mayo clinic in Arizona, I lived closer that's where I would go for a second opinion. Dr Messa.

  • Feel discouraged like this is all in my head. Had TIA 3 yrs ago and think this would have been picked up on if I had it then. DR not too concerned with symptoms, just worry most about the headaches. Need to get back to the gtm, only going once a week but just feel so bad at the end of the day.

  • This condition sucks big time Kerri. Are you having much support at home or from friends. I have found I have become quite withdrawn and don't want to participate in anything which saddens me as I have always been a go-getter.

  • Hope you're feeling better. Every day I pack my gym bag in the car but after a day of work I just want to go home. Can't wait for spring, ha ha winter is just getting started.

  • oh boy do you sound like me lol. I bought an exercise bike before Xmas and have been on it twice! Just going across the road to Tesco's and back does me in so you can imagine when I do 5 miles on the bike, my legs are like jelly when I get off. Got to be the little train "I know I can, I know I can", trouble is I start rolling downhill half way lol

  • I think I am feeling better? Dr office called couple days after my last blood draw to tell me dr was on vacation but wanted me to cut HU from 1000/day x 5 to 500 x 7. I know all my counts were low so hope this is good? Now taking at night hoping which is helping with the nausea. Going to see pulmononologist and having cardio stress test next week. Actually went to gym 4 x this week, have to practice treadmill, this was prompted by trying on dresses for my daughters wedding in August.

  • Hi jillydabrat, gosh you have been through alot , yes im always telling heamatology im so tired and very fatigue , she told me she doesnt think its too do with my bloods!!  so i went to gp who done other blood tests to find im very low on vit d but been taking them now for about 7 weeks but havent noticed any changes in way i feel , im due to start Hu end of April my platelets keep rising and im a risk factor ,because of age im Et and jak2+ best wishes and hooe you feel better soon Holly

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