Diagnosed PV July 2012, last 2 months bothered b... - MPN Voice

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Diagnosed PV July 2012, last 2 months bothered by night sweats. Haematologist seems to be panicking sweats not normal symptom of PV?

Aime profile image
Aime
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Aime
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15 Replies
jogging1 profile image
jogging1

I was diagnosed with PV April 2012. I too experienced night sweats thought I might be going through an early menopause but had blood tests and definitely not. I was told this is one of the symptoms of PV. I sometimes have night sweats two or three nights in a row then I might not get them for a few weeks.

Alired profile image
Alired

Hi,

I dont have PV (I have ET) but I have read many posts and papers about MPDs and night sweats is a very common symptom of our MPD. They affect people in very different ways.

I would question the experience of your hemo and consider taking a second opinion if he/she is panacking over your (common) symptom.

I have this as a very frequent occurrence too. Diagnosed December 2011. Despite dramatic improvement in most symptoms this has continued unabated.

Aime profile image
Aime

Thank you for your replies. I have been reading up on the MPD website but you know what its like when someone treating you suddenly says that it is not a normal symptom and starts ordering chest xrays, talking about ct scans and bone marrow biopsy. I thought I had reached a diagnosis which I have to get on with and it is worrying when it is suggested there may be something else wrong. Good to have reassurance - thanks again.

jane13 profile image
jane13

Hi,

I too get night sweats and very reassured to hear about so many others getting them. However, I was told by an expert MPD haematologist that more extreme (not mild) night sweats can be (not are) linked to development of further advancement of PV, so this may be why your haem is alert??? If everything else is OK then I agree with Alired that your haem seems to be overreacting but a second opinion would be reassuring - or a bone marrow if you don't mind them....

good luck

jane

littled profile image
littled

Hi I have PV and been having really bad sweats and too just put it down to start of menopause, over the last few weeks its become worse, just had my bloods and ready for another venesection. Take hydrox and colopidogrel. Also started experiencing chest pains had two bouts where I had to be admitted to hospital, but said could be inflammation of chest wall.

StreetPastor profile image
StreetPastor in reply to littled

Hi there,

I have costochondritis which is inflammation of the cartlidge. My breast bone really hurts when it flares up! Did they give you any med's or advise?

Aime profile image
Aime

Hi Guys, Thank you all again for your replies - they do give reassurance that I am not unusual and probably nothing more sinister is going on. I am awaiting the results of the chest x-ray and will go ahead with the ct scan and bone marrow biopsy to make sure everything is ok. The sweats can be quite severe - so it is better that everything is checked out! Will be like the bionic woman after all these tests!! My bloods are actually ok at the moment and I have been on HRT for a number of years - so not the menopause in my case.

ABman profile image
ABman

I get sweats from hot drinks: tea, coffee, soup, anything, and at night I have to use a lighter blanket than my wife beside me. I do wear pj's which I've never worn before, but they help with moderating my body temp.

BTW, a specialist I've seen has given me a med that has ameliorated the itch a lot, and feel really blessed to have that help as the itch was severe, even from my own sweat!

Aime profile image
Aime

Yes, sweats make the itching worse unfortunately and also my skin tends to become red and irritated - oh the joys!! I have not been given any meds or advice yet. No word on chest xray so hopefully that means it is ok. Got another appointment on 6 February so will hopefully get ct and bone marrow biospy out of the way soon and then if not happy will seek a second opinion definitey!! Mazd - could you please tell me again the names of the specialists in MPDs you recommended at Edinburgh Infirmary. Thank you.

Optimistic profile image
Optimistic

I had night sweats quite soon after diagnosis for a few months then they went away and not had since

lizl profile image
lizl

I'm a newbie, just diagnosed. My symptoms have included: night sweats and daytime hot flushes preceded by electric impulses down my arms and on one occasion my legs too - has anyone else had this?

Aime profile image
Aime

Hi lizl

I certainly have night sweats as I said and daytime hot flushes. Haven't experienced the electric impulses but have a lot of nerve compression problems which were there before my PV - I think! Had a venesection today and feeling crap at the moment. Drinking gallons of water.

lizl profile image
lizl

Thanks Aime,

I think they are getting fewer, may be because of the venesection I had a week ago. Who knows?

Aime profile image
Aime

Hi lizi, I think we all get some weird symptoms and it is always best to ask the docs to check everything is ok - I feel daft sometimes with some of my questions but at least it sets my mind at rest. Its good we can talk to one another on the blog. I am not long diagnosed either so maybe some of the folk who have a longer experience of PV can join in. I don't know how you felt when first diagnosed - I felt scared, uncertain, first time I suppose I had thought very much about my mortality, but the support on the website from other sufferers and from Maz, Prof Harrison has been such a saviour! Maz can also set you up with a buddy. Best Wishes.

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