For those who remember, my wife was partially diagnosed in France with an MPN after she ruptured her, what was enlarged spleen on may 1st. We finally got back to Wales 16 days ago, we saw a doctor that Monday too. She continued on the French meds up until Friday when the heparin ran out. The GP said to replace the heparin with aspirin, knowing her platelet count was rising and over 1.3 million. She seemed fine but fragile on Monday, our wedding anniversary, but since then she has become very weak and unable to stand up or balance well, and having a sensation of hearing, feeling her pulse inside her head. I am in two minds as with what to do, take her to a&e or wait until her appointment at 3.30 pm today. I can borrow a wheelchair which will be needed.
Does any of the symptoms ring a bell with anyone?
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I'd take her to A&E where they can monitor her and give the necessary tests to deal with what is going on now. If possible get them to page an MPN specialist or haematologist for a combined consultation, make sure A&E know your wife's condition. You could possibly try and phone haematologist at the hospital prior to going in and let them know you're bringing your wife in.
I wish you both well and hope they find the answer.
Agree with everyone and hope by this time you've gotten your wife into care. My best wishes to both of you in this confusing situation... how frustrating and worrying for you.
Phoned the hematologist she was to see today, and then took her in to a&e as he suggested. During triage she was vomiting blood and became unconscious, they now are checking her blood. Also had an email from hemo in France to say results not yet available and to take her in to see a hematologist as soon as possible, just like I asked the GP 16 days ago. Who prescribed aspirin which is causing her to bleed into her digestive tract. Thank you all for your support.
Just got back from a&e my poor wife has not seen the hematologist as yet 22.00 hrs but he may visit her tomorrow! She is to have a blood transfusion tonight and another tomorrow and a scan of some sort at some point. Her heart rate had gone up to @95bpm just hope they look after her tonight. Why oh why didn't the GP refer her sooner? As it was she was tagged onto a hematology clinic so would never have received the amount of care/time required. But I only found this out when I phoned this morning to ask what type of appointment she had this afternoon.
The whole affair since being back in Wales has been a shambles excepting a&e who, though not MPN specialists are keeping her alive. Do not get ill in Wales!!!
Goodness I do feel for you ans your wife - just wanted to send thoughts and care - she's in the best place now in hospital and should now quickly get the right help - all the very best
I agree you should lay a complaint. Your gp has no idea about MPN's and was negligent for prescribing your wife anything plus he's presumed it was nothing too serious (because he knows nothing about it) to rush her appointment with haematologist.
I feel deeply for you both and you may need some sort of resolution or acknowledgement of what you've been through as the anger/anxiety and frustration will eat you up over this, it's utterly disgusting the way she has been treated.
Those are the sort of symptoms I had when I was seventy anaemic with internal bleed. They are giving her blood and will do investigations to see if they can locate the site of the bleed. As she was bringing up blood I suspect the bleed is coming from her stomach or upper intestine. I am no doctor so listen to them not me!
I also have to add that I lived in North Wales for several years and although my GP was pretty clueless - he told me HU could not be chemotherapy because my hair hadn’t dropped out!! - but I got very good haematologist care at the hospital.
I hope your wife gets the care she deserves and recovers quickly. Very best wishes, Jan
You poor man, I can only hope they have got control of this now, what a sad saga of negligence or should I say ignorance.....you have experienced l sincerely hope you find a specialist who knows what they are doing . The strain you are both under is just unacceptable .but for now all your mental and emotional energy has to be for your wife, once the situation is under control is the time for questions and for you to find the medical team you can trust.
Meanwhile can I just say, for what it’s worth you have many friends on here who are sending you love and thoughts.
Thank you Sandy and all of you for your kind words. I really do not want to think what would have happened to my wife if I had not taken her to hospital this time, last time and when I phoned the pompiers the first time. I feel I will be having an uphill battle with the hematologist as he sided with the GP yesterday when I said the GP did not seem to care about my wife. The GP did not know the string of words that make up myeloproliferative neoplasms, and though given the opportunity weeks before, made no effort to find out more about it. I have not met the hematologist yet. And my first question will be "are you an MPN specialist" because from what I have experienced so far I think not.
I do not think that anyone cares as much about a person's health as that person does so you always have to be your own best advocate and fight for what you know is right. So don't take no for an answer when you know that is the wrong answer. Keep fighting and I wish you all the best. Never give up.
I’ve found this useful overview of what MF is all about, abd its treatment, on the MPN Reseach Foundation website. Printing it out and taking it along might help..
At the moment you heed all your energy for your wife, but do keep a record of your contacts with the inept heakycare profesdionals.
Reporting incompetent GPs and specialists to the General Medical Council can be a very effective way making them take notice, and also help ensure that they get any additional training they need.
I used to sit as a lay panel member on the dentists equivalent. It was eye opening. Much more effective way of sorting out bad professional practice than going to a solicitor, or to the local commissioning body.
I,do hope you don't need to, and that your wife gets the treatment she needs. She clearly has the right kind of husband.
Sorry to her your story. I had symptom. S for a long long time, they did blood tests and they came back with a note suggesting I be referred to haematology, the surgery ignored this, saying my blood was slightly thick.
To be honest my then GP was training new GPS in Leicester University hospital and in all the years he had been a doctor he had never come across PV. When I was admitted with suspected pancreatic cancer, none of the staff had heard of it, even copying my notes and highlighting the importance of the hct numbers they ignored.
It's a rare disease and we may well know more than your GP or non haematology doctor.
Hope you get sorted. I'm originally from Wales, I know w what your going through. Its a shambles up there.
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