Hi, I was diagnosed in June with MDS/MPD(N). At my last appointment, when I asked my consultant for the details of my diagnosis, she scribbled down some words on the bottom my Question List. Thrombocytopenia was one of the words. My blood counts give me a low risk and they are caused by a mutation of a gene. Can I assume that this gene is JAK2 or JAK2 mutation? I haven't been given any other information. My consultant said she could not access my diagnosis notes because they were on a computer in the lab. How can I get a copy of this? Everyone I've met at the support groups knows exactly what they've got.
MDS/MPN - JAK 2: Hi, I was diagnosed in June... - MPN Voice
MDS/MPN - JAK 2
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MaggieSylvie
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Hi Maggie. Are you confused about the words the consultant wrote when you state she wrote Thrombocytopenia as opposed to Thrombocythemia? The former being low platelets and the latter being high platelets. I only ask as you say you were diagnosed in june with an Mpn,do you know you last platelet count? Atb,tina.🤗
Everything is marked as zero or negative, so I don't really know how bad that is. I only know that I am low risk. Thanks Tina. Maggie
Was that a consultant Haematologist? tina.🤗
Yes. She is a haematologist and she diagnosed me in June following a bone marrow biopsy. My appointments are in the MacMillan Clinic but I was attending for a long time without knowing that I was a cancer patient as it never occurred to me that "anaemia" could turn out to be something more serious.
Hi Maggie, l do think you should really talk with your Haematologist about it as thrombocytopenia i'm sure is autoimmune if primary or caused by infection or anaemia or other causes it is classed as reactive but I do not think thrombocytopenia comes under the Mpn's umbrella. Atb,tina🤗
This is a familiar story. You get diagnosed out of the blue with something you did not expect and the doctor barely has the time and brain energy to explain it to you and the haematology nurse assigned to your case does not get in touch because they are also inundated with work. Are we expecting too much, expecting sympathy to be dished out at all times when the medical staff themselves have thousands of things to remember at work and in their personal lives also. These days you have to do your own research, this is how I found out about MPN Voice on the Internet.
Hi Searcher56. No I do not believe we as patients are expecting too much when once diagnosed we need to have it explained in full and I certainly would not expect sympathy. We know Doctor's have a heavy caseload along with their 'huge salary' and along with the Cns many patients. As for their personal lives they are professions and still have a duty of care to patients as patients should not be expected to research their own conditions even though some do but you cannot research without the full information in the first place. Atb,tina🤗
Yes it is frustrating the lack of full and thorough information. I cannot find full explanations even on the Internet. Since I was diagnosed in November 2016 with ETJAK2+ I have been reading any book I can find on health care and alternative treatments. MPN Voice has got information but it is basic and cautious. Maybe it is the case that nobody knows, yet, even the experts don't know.
I have just discovered a site called netdoctor.co.uk and it seems to have all the answers that it is possible for an online resource to give to a layperson. It seems that thrombocytopenia and thrombocytosis are the same thing, although it doesn't say so, and the clues it gives are that JAK2 is common in people with the MDS/MPN crossover. So I guess that I have that. The high platelets may be caused by my recently diagnosed osteoarthritis, and maybe the excruciating pain I experienced from that some months after diagnosis (I couldn't walk at all for a few days) was actually caused by a blood clot. Trouble is - while my haematologist has done some very thorough testing - the NHS doesn't provide anything approaching a properly holistic service. Thank goodness for Google!
Hi Maggie, No you are definitely mistaken about Thrombocytopenia and Thrombocytosis being the same thing. Thrombocytopenia is too few platelets and could be autoimmune in the primary form or in secondary form another medical condition or illness and even after surgery. I believe you are getting Thrombocytosis and Thrombocythemia mixed up which is the same condition which is too many platelets which is an Mpn. Even my own Gp as mixed them up in the past. That is why it is best you discuss this with your Haematologist. Atb,tina.
That is happening to me my doctor didnt really explain about the disease I did my own research because I need to know my condition and this kind of disease thats totally shocked me that I have a rare blood cancer and it is uncurable. I was like my whole world collapsed at that moment. And so many questions in my mind why I have this kind of disease and why me of all the people.
I agree. Not good enough though is it? I'm quite tough in the illness stakes but the lack of support has a really negative effect on my well-being. Just direct me to people in a similar situation and let me listen and talk. Communication and 'contact' with like people would make my life and theirs a lot more bearable. People respond better to group situations. We need to be able to support each other....not just here.
This is an amazing, supportive space for us. Thank you to all involved.x
Yes, and when we meet others at support groups, we need to know what our condition is called. Just calling it MDS/MPN is so general. It's all very well spending half an hour explaining what our bloods are doing and what the bone marrow is not doing, but we need to know the WORDS! Only then can we have proper communication with other sufferers.
That is appalling at so many levels that it boggles the mind. You should be provided a hard copy of all of your labs anytime you request them. If your consultant can't access the results, then how could she possible make any recommendations regarding your care. Scribbling some notes at the bottom of your list of questions rather than ensuring you understood your diagnosis is an unacceptable level of care. If I was in your situation I would do the following.
1. Contact the lab directly and get a copy of all of your lab results.
a. See if there is a patient portal for you to directly access your record
2. Fire your consultant and get a new one who will make the effort to provide quality care.
3. Contact a true MPN specialist who can review your case.
a. It is worth travelling and doing whatever is necessary to see a MPN specialist
4. Keep going to appointments with a list of questions. Don't let providers blow you off.
I have learned that assertive patients get higher quality care. Passive patients do not. You deserve to receive high quality care, but you cannot count on receiving it unless you take charge of your own treatment and hold providers accountable. There are some really terrific providers out there who take very good care of their patients. You have a fundamental right to choose to receive care from providers who will provide you with the quality of care that you deserve.
Hope you get all your questions answered ASAP.
I ended up at the hospital yesterday having had the first TiA since my diagnosis. Prior to that I had had so many I lost count, which it seems was what generated (in hospital after another) the interest in further investation. that is when they decided I was ET JAK2+ etc.
Yesterday, I began by phoning my specialist nirse and asking her if my TIA may have been caused by my haema telling me to dose less frequently because I hadn't felt good by doing so. she told me to go to A&E to be checked out. She told me to tell them I was ET JAK2+ and they would probably send me through Triage.
I did so. 11.10 I arrived. 5 p.m. I left having had all the usual stoke tests, which I knew I didn't need. At 3.30 the stroke doctor said, 'do you you have any blood problems'? Puzzled, I gave her the look. 'Like what?', I said. 'Like diabetis or something, .......' She got another look and this made me give it full throttle. 'I have a blood cancer,' said I. Oh, was she shocked? I told her that surely with keep looking at the screen she could see the details on the file. 'I can't access your file', said the doctor, I keep trying and I can't access anything but your last blood test. It doesn't seem to be available.'
Let me mention at this time that I was in the exact same hospital as I visit for my MPN. Nobody had recorded the fact that I had anything other than that which I had suffered over the last few days, which amount to a TIA. Something I had not expected to experience since my diagnosis and Pegasys prescription.
How on earth are doctors in A&E expected to treat people specifically to their needs or effectively?
There are so many ways in which the English NHS demonstrates incorrect management and methods which can do nothing more than generate extra costs and over work.
Anyway! Mustn't grumble. One nurse asked me what time I had arrived and when I told her 11 o'clock she asked if that was in the night r the morning. when I was told it was the morning she said, 'oh, that's not bad at all then.' I'd already established it wan't busy but those people are working so hard and so long when so many small things could be altered to make their lifes run more smoothly. There, I feel better now.
Everywhere - it's lack of communication between departments and staff. I don't understand why that can't be sorted out properly once and for all! Get it right and it's good for patients and good for nursing staff.
I think you should grumble - loudly and vociferously. Doctors cannot provide you quality care if they cannot access your records. If their electronic health record is that dysfunctional, then it needs to be fixed or replaced; or, perhaps, the providers need to learn how to use it. If patients do not speak up and advocate for change, then systems of care will be content to just coast along without making any changes. I would complain formally - in writing - and refuse to be placated until the problems are fixed.
Meanwhile - suggest you get hard copies of all of your labs, reports, visit summaries, etc. Create a detailed and organized file of your own medical records. Here in the States, I have to move through multiple medical care systems with electronic record systems that do not integrate my record. I maintain a complete copy, both on paper and electronically, of my medical record. I take any of the vital/relevant information with me to any trip to a doctor. In an emergency, I have back-up copies stored in a cloud-drive folder that I can access from most anywhere.
I have found that we must take responsibility for the quality of our care. We have to hold providers and systems of care accountable, while at the same time providing them with the information they need to provide our care. Sometimes systems are dysfunctional and we can't just wait around for them to fix it. We just have to find a way to work around the dysfunction.
All the best
I was back in the hospital today for my TIA clinic. This was arranged by the doctor I mentioned. Very efficient I thought. I told him the doctor in A&E couldn't access my file. Guess what I was told? 'Yes, they can't access your notes in A&E. That's normal!!!!! Goodness help us. No wonder the UK NHS costs more than it should.
Dear god!!! Is it me? should not the ‘powers that be’ realise the sense of access to patient records in A&E? - words actually fail me!! - like many others I carry my own ‘blood book’ (not sure if our hope for an ‘official’ one ever came off) so if I should ever be bundled off as an emergency, my book has a précis of my conditions, haem, medications, + blood counts which I now insist on writing in at each appointment. I hope you are fully recovered now - best wishes Anne-Marie.
True! You've certainly given me a very good idea. My book begins when I get all the results from my previous tests etc. Do you know, as many times as I told that doctor anything yesterday, she ignored it. she was only thinking about what she had to do next. at reception, I told the person about my condition etc. and what I was taking. I was sent away with a piece of paper with my name and number on it. I just imagined the other details would be on the system for them but no, nothing. all that time repeating everything over and over again.... No wonder we're in the 'merde'. ATB x
Haha, good luck with that!! - I made up my book based on a layout from a pic posted by shiftzz (some trusts provide patient held record ‘blood book’ - in Ireland + I’m fairly sure Leicester? - I know Guys hospital in London were involved in producing one we could maybe get via Maz but as I said, not sure if that ever got off the ground) good luck getting your prev test results. Anne-Marie.
In the back of Understanding Myelodysplastic Syndromes, brought out by Bloodwise, there are some pages to record bloods and symptoms. These could be copied. ( I know this is the MPD site but I have both and there doesn't seem to be a book explaining MPD.)
Since writing this, I was in the Macmillan centre on Thursday and mentioned that there doesn't see to be an equivalent MPD book, and was given one! It's called Myeloproliferative Neoplasms (of course) but it doesn't include thrombocytosis because when it was published, that wasn't categorised as an MPN. Happy days.
I became friendly with a lady quite recently who it transpires, has the opposite to myself. She doen't make enough platelets. She lives locally to me (St.Annes and the Fylde) and she was sent straight to a consultant in Manchester.
Anyone know why I or they, were not sent to a similar consultant, who actually has knowledge of my condition?
If I requested this, do you think I would be able to have an apppointment without my existing consultant making comments like he did previously???? What do you think?????
If you have not already seen it, if you google mpnforum list of haematologists (mpnforum.com) you will find specialists and their hospitals - there is no reason that you should not be able to request a referral (not sure of the politics but it was my GP who put a referral through for me to change consultants though it was after ‘issues’ - new consultant is at same hospital + not a specialist in MPN but I am sticking with them for now - should my condition(s) decide to escalate I will consider a move to a specialist) best Anne-Marie.
Truly appalling. It is hard to understand why anyone would find this acceptable. Quality health care begins with using good data. Good attitudes and the right KSAs are needed too. Sounds like you are having troubles on all fronts.
Do you have patient portals available with your different electronic health records? If so, you can easily access all of this data yourself.
No. We do not. It is a truly antiquated system. It demoralises those excellent medics of all types who take pride in their 'calling'.
My GP access has just been updated. It show NONE of my allergies, intolerances or the correct dates previous drugs were proscribed over the 50+years I have been with the surgery. Maybe they consider the date these were given makes no difference.
I went online to find an appointment to update this and discuss my recent findings at the hospital, November 25th is the first being offered with one doctor I have not used for years.
Well back to the plan of paper copies of everything. You would think something as simple as a patient portal would be readily available. Every provider I see has one. Some are better than others, but they all have them.
I can go online and order repeat prescriptions from my surgery but I cannot access any medical records. They don't keep them for a lifetime anyway. I am a carer so will take care of all this stuff when I have time, as I have concerts coming up too.
Just to let you know, I telephoned this morning and asked if I could have an appointment with my usual doctor and had no problem getting one. Thank goodness. she is the only GP there who has the time and inclination to listen and act according to my best interests. i have no doubt that she is as good with all her patients. She's a lovely persona dna a caring GP.
That is nice..
Thank you to everyone who has replied to my post; I didn't realise it would create so much "disgust" - not sure that's the right word, but "anger" seems too much. I will, at some stage, contact the labs or the PALS department to see if I can get the standard information on my own condition that other people seem to have. I have every faith in my consultant but in hindsight, I was lead to believe that I was a timewaster (I was expecting an appointment that didn't happen) and when it did happen after I had phoned to find out when I should be attending, I was kept waiting for ever at Bloods, making me late for that appointment, and then to be sat down, and after being asked what I understood from my previous appointment with a junior doctor) then told my life was now to be shorter than I was expecting, was unbelievable. I think it took several weeks for me to get my head round it, and I only told my partner last week. He said that I wasn't ill, and walked away. Oh, and my GP said she'd known LOADS of people with MDS and they have lived into good old age. (2% average in a life time - how is that LOADS?) Perhaps she hadn't read that I have both MDS and MPN. My next appointment at the hospital is 2nd January, early.
It is a good site, this, especially as the MDS one on its own seems to be so general, covering so many degrees of the condition. I am so grateful to you all for the support you are giving so willingly. Thank you, Maggie
Hi Maggie, that is great you have faith in your consultant but if you want to know what you've actually got, I think you need to talk to your Cns at the Hospital and question why Thrombocytopenia was "scribbled down" by your Consultant when it is not an Mpn. If you don't mind me asking why did your
Gp refer you to Haematology in the first place? Atb,tina.🤗
Hi Tina, a GP at my surgery said he thought I was anaemic. I had gone to him because I could hear my heart thumping loudly every time it was quiet. I had lots of blood tests, all inconclusive until I had the BMB (very painful - hope I don't have to have any more of those). Then I had an appointment with a junior doctor who delivered a learned monologue, with a paramedic sitting in, and I understood that I had red blood cells that were deformed. Then I was forgotten about, and after a few months my next appointment was back with the consultant, and she explained everything quite well. I was introduced to a Macmillan nurse who sat through this, and asked if I was ok when I received the prognosis. They told me that I couldn't have any treatment because I have MDS/MPN and I am also in my seventies, so a stem cell implant might kill me and blood transfusions might overload my liver with iron. I was given the MDS Patient Handbook.
Because the abdominal scan she arranged showed normal organs, I took the trouble to go on the Transplant Registry. Today, I read that if you have high platelet counts you shouldn't donate organs, as you might pass it on. So we can't pass on the gene to our children but we can pass on the symptoms of it others! I'm not cancelling that until I have spoken to the consultant. It's only a few weeks away.
It's almost as if they don't want you to know exactly what you've got so you can't research properly and catch them out.
I'm wondering whether, since high platelet counts can be the result of the cells fighting infection or inflammation, this aspect of it is perhaps temporary, particularly as I had so many inconclusive test results earlier this year.
At least talking to you means I can sleep at night! Thanks.
Hi again Maggie, I would definitely give your Cns/Macmillan a call if still unsure about actual diagnosis and why your consultant couldn't access your diagnosis notes as they should all be linked up, this is not a third world country! Sometimes we have to 'shout' that little bit harder to get a full explaination in plain English and the proper implications to our long term outlook. The one good thing is the professors and science is moving on with new meds all the time and as long as we get a reasonable quality of life then I won't complain. I wish you well Maggie and please keep me updated. Atb,tina.🤗
In the end I did contact PALS and a member of the Macmillan nursing team phoned me and told me exactly what I have - MDS (refractory anaemia)and MPN (thrombocytosis). Someone on this site tried to tell me that thrombocytosis is not an MPN but is has now been included in that category, at least it was when I was diagnosed in June. I can't see what the difference is between thrombocytosis and essential thrombocytosis but I believe the latter is probably more unpleasant. Anyway, contacting PALS by email got me the result I wanted.
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