MPN Voice

Haem appointment disappointing

Hello everybody I just want to vent a little, hope that's ok? I have ET/Jak2 and on InterferonAlpha. Went to Haem this week and although the interferon has helped me considerably I have been experiencing severe hip and girdle pain, which I told him about. His response, 'well we'll run out of options, you had that before the interferon, your inflammatory markers are normal, your levels are fine ...' I left his office totally dejected and in severe pain. A couple of days later I had a scheduled appointment with a neurologist - I had been having episodes of neurological disturbance over many years. Finally I was diagnosed with Brainstem Aura. He also told me I had abnormal antibodies, and when I told him about the bone pain, he immediately said he'd refer me to his colleague to investigate these findings; why didn't the Haem look into it? I have no trust now and even though my new symptoms may amount to nothing I cannot understand why the Haem didn't reassure me it that it was or is, possibly nothing, just symptomatic of the ET/Interferon...

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Hi Vennie,

I have PV, and am fine. I don't know where you live but I lost confidence in my haemo 4 years ago when he sent me packing with a blood count much higher than it should have been. I took to t'internet and found a haemo who specialises in MPN's at Christie's in Manchester.

Suggest you do the same. You may have to travel ( I drive an hour and a half there and back) Once you've found a suitable specialist, just ask your gp to refer you. I actually emailed my haematologist and he sent a lovely reply saying he'd be delighted to see me.

We can choose any hospital we like, except for an emergency.

There are apparently 36 blood cancers, and haematologists can't specialise in them all, so choose someone who knows and understands this particular blood cancer, and the symptoms of ET.

Maz might be able to help you, or look at MPNvoice.org.uk

Love

Louise

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Hi Vennie,

losing confidence in the Dr who is in charge of keeping you as well as possible is not good. My haematologist couldn't be nicer but over the course of this year has, I believe, made some mistakes and this has had a direct impact on the course and treatment pathway of my condition over recent months (PV transition to MF). Fortunately,as well as my local 'generalist' haem, I am now seeing a an expert haem and consequently I am no longer 'twisting in the wind', wondering what's giong on and what's going to happen. I should point out that it was my local haem who referred me to the expert for a 2nd opinion and, in general, I am quite happy with my local haem but the mistake has left me with slight doubts.

You may already be aware of the right that every patient has wherein they are able to ask their GP (or haem) to be referred to the hospital and consultant of their choice. I did not know about this right until quite recently. Travelling any distance may be difficult for you but if you can, and you are really not happy with the care, advcie and treatment you are being given then you might consider looking into asking for a referral. nhs.uk/chq/pages/1094.aspx?...

If you are unwell and are not happy with your Dr then you should not be bashful (like me!) about seeking other opinion and you have that right. I wish you well

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