Haematology with pv interest

[Mandy-burninghands1]

Hiya I’m wanting some advise if anyone can help me please got taken in hospital last week with hands feet burning severe headache had restless legs and more . One dr said to me she thinks it is pv re my bloods and symptoms , then another dr comes along and say no it’s not . I have since researched symptoms etc and there is only 3 I haven’t got in the full list . I’m wanting to pay private to see someone who has a special interest in this . I’m from United Kingdom north east area . Any recommendations please

[MPort]

Hi Mandy,

It is scary to have those symptoms and be admitted to hospital and having doctors who disagreed on what might be wrong. The first defining test for MPN's is a blood test. If you have it the red or platelet count is too high. Did they do a full blood count to check your blood levels? If so did you hear the results? If not I hope you can get them. Then you can research the levels and ask questions here.

There are other primary tests to establish an MPN but the blood test is the easiest and quickest.

Best of luck

Mairead

I live in South East so can't recommend a specialist in your area. I too went privately when the results of a routine blood test showed very high red count.

[Mandy-burninghands1 in reply to MPort]

Yes blood tests confirm high red cells for approx 2 years and all symptoms but one dr says yes the other no . Hence I feel I need to see an haematologist , no faith in them now x

[Mandy-burninghands1 in reply to MPort]

Hi thanks , I managed to get my results they I sent them to a private haematologist with a special interest in vp and he rang and discussed things with me he is pretty sure it is but also querying leukaemia . The consultation cost me £185 he was fab and has sent me and my gp and in depth report of my bloods with his suspicions of 2 problems and ask him to order me a variation of blood work . DR Shafeek based in Birmingham this man was fab and now I’m awaiting bloods for further tests . Thanks everyone for your help . I will keep you all updated xx

[Ebot]

Hi there

The critical thing is, what did your blood tests show? Haematocrit? Platelets? The only way to confirm an MPN diagnosis is through extensive blood tests including testing for mutations such as JAK2 etc. Even then the answer is not always clear cut.

MPN specialists are a rare commodity and some of the leading experts like Professor Harrison in London do not have a private practice. I’m sure though that others on this Forum will come up with some names in your area (even if they only have an NHS practice).

Perhaps it would be worth a visit to your GP to discuss your concerns and ask for a referral to an NHS MPN specialist / haematologist for a proper investigation and opinion. Equally, a good haematologist seen privately will be able to carry out the appropriate tests.

There are many reasons why you might have experienced the symptoms you have. Since PV has been raised, it is important to establish for certain whether or not this is the case. Certainly you need to put your mind at ease and get to the bottom of this. Wishing you all the best.

[Mandy-burninghands1 in reply to Ebot]

Thanks my bloods do indicate this and was looking at dr Caroline Harrison but she like you say isn’t private

[Hidden in reply to Mandy-burninghands1]

You can get your GP to refer you to her if you are prepared to travel.

[Wyebird]

How worrying for you. MPort has given sound advice. In addition to that I would suggest you obtain your FBC. Study the abnormal ranges Go to your GP and discuss your findings. Request a haematology appointment anywhere in the country as there is a shortage. This is what I did. I ended up travelling about 40 miles away. Once you are in the system being transferred nearer to home is easy.

[Mandy-burninghands1 in reply to Wyebird]

Thanks for help x

[Mazcd Partner MPNVoice]

Hi Mandy, sorry to hear that you had this experience, I hope you are feeling better now. You should discuss this with your GP with regards to any follow up tests and perhaps a referral to a haematologist for their opinion on your blood test results. Best wishes, Maz

[hunter5582]

You definitely need to see a MPN Specialist - not just any hematologist. Most docs, even hematologists, have very little experience with MPNs. You need a doc with the right KSAs. Here is a list of patient-recommended docs mpnforum.com/list-hem./ .

it is worth doing whatever it takes to get to see a doc with the expertise you need.

All the best to you. Do let us know how you get along.

[Mandy-burninghands1 in reply to hunter5582]

Thanks so much used this list and found the right man

[tracey13]

Hiya,

We from the north east area.

My husband was diagnosed with PV 6 years ago he's now got myelofibrosis .

He used to get very itchy and terrible headaches .

He's on new medication now and has been fine for well over a year now.

His bloods showed he had a blood cancer they done a test for the jak2 mutation and his came back positive.

Hope you get some answers soon.

Tracey

[Mandy-burninghands1 in reply to tracey13]

What medication do they use . I would love to feel normalish x

[tracey13 in reply to Mandy-burninghands1]

My husband is on ruxolitanib he was absolutely on his knees with exhaustion before starting this medication. It's reduced his spleen size down . He manages daily life more normal now . He works full time. He has stopped caffeine as that was draining him. He's changed his diet and lost two stone he feels a lot better in himself now.

He also takes two hydroxy tablets a week.

Tracey