I have pv, could I have me/cfs too?: I have all... - MPN Voice

MPN Voice
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I have pv, could I have me/cfs too?

Emeraldpv
Emeraldpv

I have all the usual symptoms/issues with pv the main one being fatigue. But it really lays me out and I’ve been off sick since April.

I was talking about my problems with a friend who has me, who said her symptoms were similar to mine, even including the ibs.

Will my gp think I’m daft if I mention it, and say there are overlapping symptoms?

10 Replies
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doesn't pv explain yr fatigue? Why think u have something else as well? or do i misunderstand u?

It is always worthwhile raising concerns about any symptoms with your GP & also your haematologist . It is entirely possible to have several different inrelated health issues whose symptoms present in the same way . My symptoms from my fibromyalgia & cfs recently raised concerns about possible changes from ET to mylofibrosis . Get checked to alleviate your worries. Take care 😊

Get printouts of your blood test results from as far back as you can. See when you were at your best, and compare with what your results are now. Then confront your GP. If your hemoglobin is anything like my wife's it could be the cause? Hers was 56 last night in A&E!

Nothing wrong with seeing GP. I had a breathing problem that went undetected until I was diagnosed with ET.

Thanks. The way I feel doesn’t seem linked to my bloods, they’re down at 43 at the moment and couldn’t feel worse.

I ended up at the gp as my face is going tingly! Like I need anything else!

It was really nice to be taken seriously and he said that there might be something else, so he’s running integer tests.

hi emerald. It was interesting to read your message re MF/CFS. I have ET and was diagnosed 5 years ago with. CFS by a dr. Who has"an interest" in CFS. I live in Wales and there are no specialists here. You are correct in saying that the symptoms of an MPN and CFS are similar. It's a struggle isn't it. My GP is trying to g et me an appointment in Bristol at the ME clinic as Wales won't fund treatment in England. Do get checked because we have a double burden with CFS and MPN. My haemo.says my fatigue and all the other symptoms are not all related to ET. Hope you find an answer and please let me know the outcome. Very best wishes to you. Mary

Thanks mary, my tingle/numbness I had in my scalp has snow affected my face. So I’m pretty sure I’m right now.

I’ve been to a neurologist, having an mri to rule out ms, then a probable referral to a rheumatologist re fibromyalgia

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