I've posted a few times on here so won't bore you all with all the details again.
Keeping it short and sweet I was diagnosed last September with PV following a bone marrow biopsy.
I've been suffering alot with a number of symptoms but the one that has been a real issue for me has been the Fatigue.
I was refered to the senior Haematologist at Southmead Hospital in Bristol as it looked like I might have slipped through the net with regards to treatment and he arranged for two Venusections within 20 days and I feel so much better than I did a while back.
He did mention though that they were not able to obtan enough of the marrow to confirm if I have Polycythemia Vera or Secondary Polycythemia even though I was told I had PV following the Bone Marrow biopsy a few months ago.
I have another appointment on the 20th Jan and I wondering if I should be pushing for the bone marrow to be done again.
Can anyone help me please as i don't want to tell the Haematologist the venusections have helped if he then decides to leave it at that . I'm still concerened that something hasn't yet been identified if that makes sense.
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James1731
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I am sure that he will notice from the bloods that your venesections have helped and I would like to think that they would be requesting a further BMB if they didn't get sufficient information from there first take. I have had two so far - mine was confirmed first draw, but I am on the Majic trial. If your unsure just mention it to him/her. I like to think as I am sure most of us do that we are in good hands. I'll keep my fingers crossed that it is 2nd PV as I understand that can be reversed/ Good Luck!!
Thank you for replying and I so hope it's secondary as well.
A few months ago I felt terrible and was worried I would not be able to hold my job down but now feel so different in a good way.
Just wondering if they offer me another BMB if I should push them for it so I will know one way of another.I think it could make a difference if I was to stop working due to illness which hopefully won't be an option going forward.
I'm also a little concerned with something I mentioned when I was first seen but hasn't been mentioned again so not sure if they recorded everything I told them....I do speak fast though haha
Not sure if you have had this but every time I swallow it feels like something is caught at the back of my throat.
I've had it a while now and thought it was down to some tablets I was taking.
I think if they offer you it then take it, always better to know. I have primary PV, I have been diagnosed 3 + years, I still work full time, I am also on the liver transplant list too because I have Cirrhosis. I know what you mean with things caught in your through, but mine is normally after banding for varicies. I wish you lots of luck!
Hi. If I were u I would want to know whether I have secondary PV or the Mutant Gene variety! Why? Because presumably the treatment and prognosis are different. So I would push for a reasonably clear diagnosis, rather than another biopsy per say: leave it to the medics to work out what they need todo to achieve this goal. Good luck
Hi James , , agree with Jane. I would want a clear unambiguous diagnosis if at all possible at this stage and I would place ball firmly in consultants court as to how this is achieved for you. It is very important to know as precisely as possible as your healthcare plan will be governed by it.
Hi James, I have asked Prof Harrison for you and she has said if you have any doubts you should raise them with your haematologist and that it is possible to diagnose PV without a bone marrow biopsy.
Well I pushed as much as I could but have been told more tests are needed.
He said I am in a small group of people that have this condition but he doesn't know why yet and it's going to take some time.
Following the visit prior to the one on the 20th though he copied me in on a letter he sent to my GP and explained that the bone marrow assessment failed to collect Trephine and therefore is unlikely to be helpful in assessing the possibility of Primary PV.
He is going to write to my doctor again as he is concerned they have not been able to manage my high blood pressure which I said I have had for 5 years but he said there are other condtions that are not Polycythemia that would cause high blood pressure and too many red blood cell production.
I'm kinda of happy that he is just not leaving it and assuming it's secondary PV but I can't find anything on google that says it's anything else.
It's never easy with me haha and to top it off my next appointment is in 4 weeks which is great but with the first person I saw who said 100% I had PV as the bmb had confirmed this.
I'm still keeping my chin up even though i've been feeling terrible for weeks and at least my employer is still fully behind me.
Sorry I can't agree that you can diagnose PV without a clear confirmation from a Bmb, having suffered 3 years with the wrong diagnosis, even a low EPO is not indicative as there are conditions for SP that can cause this.
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