Feel like I'm going to pass out

[Nettie22]

For the passed month I have been feeling really dizzy so I been making sure to drink lots of water. Also here and there I have been feeling like I'm going to pass out even when I'm led in bed which scares the life out of me. I'm not sure what's going on. My last venesection was the end of November I'm not due my next until end of February. I've noticed the tiredness is getting worse along with the rest of the symptoms you get with PV . I'm still trying g to get my head round it all . Just feel like giving up at the moment . Hoping you guys can help .

[mhos61]

Is it possible to phone your haematology clinic to discuss your symptoms with a specialist nurse?

I don’t know much about PV, I have ET. Can having venesection make you anaemic I wonder? I hope someone with PV can advise you.

Mary x

[Nettie22 in reply to mhos61]

Thank you Mary for your reply, I have been given a name of a specialist nurse but no contact details. So I will have to see if I can track her down. I don't like bothering anyone after I first saw the haematologist back in October and when asked about PV he said he didn't have a clue.

[mhos61 in reply to Nettie22]

On my diagnosis of ET my specialist assigned nurse gave me a card with her contact details and said that I could contact her anytime. I’ve never had to do that but it’s peace of mind to know that I can.

I would definitely track down the contact details of your SN to discuss these symptoms.

I can’t believe the response you had from your haematologist with regards to your question on PV. It’s simply not good enough!

Hope you get answers soon.

Mary xx

[francesb]

Hi, I really suggest you find a haematologist in your area who does regularly deal with MPN patients, it's not good enough to say they "haven't got a clue". Perhaps Maz or people on here can point you in the right direction if you say which county you live in. Hope you find better support soon, Best wishes, Frances.

[jane13]

or go to see yr GP?

[Ebot]

Hello. Please don’t hold back in contacting the specialist nurse. Certainly at Guy’s we’re always encouraged to make contact at any time between appointments if symptoms have changed or something is bothering us. It’s really important because the condition can change and you should know whether it’s something that needs attention or new management - or simply reassurance. And I would absolutely agree it’s worth seeking out a consultant who is a specialist and does have a clue! Hope you get some good advice very soon.

[Nettie22]

Thank you for all of your replies I've made an appointment to see my GP hopefully he can help with contacting the specialist nurse.

[Mazcd Partner MPNVoice in reply to Nettie22]

Hi Nettie, sorry you are feeling like this, it can't be nice for you. With regards contacting your nurse, you could phone the haematology department and ask them for the contact details, or ask for the nurse to give you a call. Maz