MPN Voice
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I visited my GP last November with pains in my upper arms and other aches (head and abdomen). Blood tests culminated in a diagnosis of PV in February this year. I have been on 500mg of Hydroxy daily since mid-March and I've had two venesections.

My question: The aches in the arms have been slowly getting worse, most often when I raise my arms. Quite debilitating! Has anyone come across this, either personally or in their reading?

Many thanks,

Peter

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Hi Peter, welcome to our forum, I do know that many people with MPNs do suffer with bone pains, in their legs and arms etc, but not sure about it being more when raising arms, maybe you should speak to your GP about this. Maz

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Hi Maz, Thanks for your kind welcome.

The pain is either when I am motionless (eg, on waking) or when I move the arms at certain angles. Sometimes it feels like a bone pain and sometimes like a muscle pain/weakness. I'm trying more or less to ignore it, eg, I still play a spot of badminton with my 13 year old son in the back garden!

I did raise the issue with my GP in early February and he sent me off for x-rays but the results did not show anything. I mentioned the problem to the consultant at my last meeting but she merely noted it without offering any comments. As the problem seems to have appeared more or less at the same time as the MPN (ie, since the increased counts in the blood tests), I've naturally suspected a link, without coming across anything so far in the literature. I have my next haemo appointment in mid-May (with the nurse) and with a consultant in June. I'm inclined to try again with GP. I'll keep you posted if I learn anything that might be of use for others.

Many thanks, Peter

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Hi Peter , welcome to our Forum I hope you find it helpful along your way with PV. I don't have PV but I have read alot about MPN and I haven't seen anything about pains in the upper arms that aren't accompanied by swelling which would indicate something more serious going on. Or as Maz says you can experience bone pain due to it affecting the marrow. The main area for pain is the abdomen due to spleen enlargement. So it could possibly be co-incidental and unrelated.

As our lovely Maz advises I would certainly see your GP again as these pains are happening for a reason and you need to know what it is. Anyway you need to thrash your son at badminton 😉.

Regards Chris

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Might be a pinched nerve in neck. Try icing neck a few times a day. I understand that every ailment we have we blame on our diagnosis. I try not to do that

Good luck

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Thanks. You make a good point.

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Hi Peter18. Has your GP run any heart tests? Last year right around this time, I started experiencing weird upper arm pain (both arms) and my GP ran various tests & found nothing. In Nov, the pain got worse and I ended up in the hospital where I found I needed 2 stents for heart blockages. It was only then that I found out my platelets were too high & was told to see a haem who diagnosed me with ET. Don’t want to scare you, but reading of your arm pain reminded me of what I went through.

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All suggestions are useful. I'll certainly bear this one in mind when I see practitioner. Many thanks.

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