Why I ask this is I have been diagnosed PRV Jak 2 positive since February 2012 and up 'til two days ago had only seen one consultant who had treated me with venesections on a regular basis first weekly then settled into a two monthly gap. This particular consultant retired two weeks ago giving me my last venesection then but two days ago I met my new person. I will apparently only see this consultant again in six months time as her team will do the blood tests, venesections etc.
I did mention to the consultant that tiredness was my biggest bug bear and she seemed surprised generally and asked if my GP had checked for other causes. I did not even get to mention the awful hot sweats, light headedness etc. I thought she would not be that interested. At least that is how I felt and I hope I am not being unfair to this person.
When I first discovered MPD voice it gave me such an uplift to see I was not imagining my symptoms.
You see, I believed it would be a good move to be seeing another consultant as nice as my first consultant was, I felt I knew more about PRV in the end than she did! (Through researching on the web and reading everything positive I could). Now I feel flat so I am wondering if the team who handle my venesections will be more knowledgeable and further wondered if my experience is similar to others.
Linds
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linds
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I think many of us have experienced similar feelings. Actually, I no longer expect very much from my GP and haem . The break-through for me was when I read on the web site (I think) that I should learn to manage my own illness. This I have tried to do and find MPD Voice a source of practical help and support. I have experimented with my dose of HU (with the agreement of the haem) and now take slightly less than originally prescribed. I am trying to use diet and exercise as a way of combatting fatigue - possibly with a little success. At least I feel I am doing something and I scan the web site regularly hoping to find other ideas. Anyway, I hope you soon feel better about things and feel less abandoned.- Isn't it weird to feel you know more than your doctor and hospital - at least where I live! Sallie
Sallie, thank you for your reply and the positive vibes. Ever since I had the diagnosis I have tried to be up-beat and for the most part I have been successful I think but every now and then lately I have felt thoroughly lost. Your act in replying has meant loads. Would you tell me more about your exercise routine as this is the bit I have found hardest to push. I used to walk every day for at least four/five miles as I live by a beautiful river and walk lock to lock and back. This was the first clue that something was not right with me as my energy levels gradually faded and I put this down to age not any condition. It was gout that brought me to diagnoses. Do you have to force yourself to exercise and do you ever find shortness of breath a problem? I am 66 by the way and apart from this PRV have had nothing to tackle before in the health department so consider myself to have been very fortunate. Always watched my diet in the sense of organic, fresh etc. My husband who eats everything jokes that this fastidiousness did not serve me well!
Your last sentence I concur with completely. Linds
Hi Linds, I am thinking about changing haems and asking for a second opinion. Although mine are very nice (I see a different one each time), they can be quite arrogant. I told the Prof that I was on the MPD website and had joined the forum. His reply was "remember they don't know any more than we do." My GP is great and freely admits he knows little and the nurse at the venesection clinc seems to know the most!! Kind regards Aime
Thanks Aime - I am holding out for positive feed-back from my visit to venesection clinic although have not got date yet so possibly will have to follow this up myself. Grateful for your interest though.
I feel the same, my haem (when i see her its been a year now) treats me pretty badly, im spoken to like she's just trodden in something nasty.
The haematology nurse who do my venasections are fantastic I banter with them all the time. But I can't talk about my health regarding fears symptoms and changes because the only response I get is oh well you'll be ok.
My RBC has recently started to increase very fast, and platelets have started to drop. I hope its not a sign of MF. I doubt it is, but I have a lot of venasections in the last 6 years.
Thank you Infuseme for replying - we all seem to have varying degrees of the same feeling when it comes to our consultants but I hope I am fortunate and have nurses such as yours when I next have a venesection. Have not been given my appointment yet though so I suppose I must chase them up and remind them I am now part of the system.
My new haemetologist did warn me I might have to do this!
Regarding your fears and changes, that is just where this site is so beneficial - we can boost each other. I expect your situation is just a blip but don't forget, you are entitled to a second opinion if you feel you would like one.
The problem with a site like this is we forget just how rare these diseases are. I have worked as a GP and never seen another patient with either PV or MF in nearly 24 years in practice and I do around 5500 consultations a year. My own consultant has never had a patient on ruxolitinib. So we are often unfair to our own doctors. How can we expect them to know everything about a disease they see little of. Reading it in a book is no substitute for the personal experience we all get of these conditions and one thing that comes across from reading what people post here is that we are a complicated group. What you experience is not what I experience and we are all individuals. We have a right to expect our doctors to be current in theory but we do have a responsibility to ourselves to tailor that theory into a practical way of managing our own illness.
Yes some doctors will be better than others and some hospital departments are better than others. They may work in different ways. If you see problems tell them but remember they are subject to the whims of management and do not run their departments autonimously.
Thank you Skodaguy. I would prefer to say how helpful a site like this is - it is a lonely feeling not knowing anyone who has the same disease and so reading of others with similar side effects/symptoms stops the panic. At least in my case. I have an excellent GP who has had two cases of PRV in his career and admits to knowing only a little but he is willing to listen and is not at all dismissive. However, it is the haemetologist/consultant that I need to rely on to give me the correct treatments as I am not medically trained - the rest I am learning to manage.
I so agree this site and others like it are a godsend for those of us who are learning about our conditions. I have learn't much and others symptoms being my own ts meaning to them. My first visit when dx my hemo did tell me that my fatique had nothing to do with my condiiton and that was confusing to me but on reading these sites I find it is a common thread. One thing I am wondering can this still really be considered a rare condition, there appears to be many of us with one or another of these MPDs.
Hi Guys, I am too beginning to wonder how rare our condition is as I think (judging by my symptoms) I have had PV much longer than last year. My haem claimed if the fatigue was a symptom that it should get better after venesection and if it didn't it wasn't connected to PV - what a load of rubbish I have since learned - mainly from this forum which is definitely a godsend!! Kind regards Aime
Hello Aime and Shelsween. When I was diagnosed last year my haem told me she thought I possibly had had the condition for roughly six years and this was because of the size of my spleen. However, symptoms don't always start appearing for a while and as in my case, when I did have symptoms like itching, I blamed it on my body lotion or new shower gells. The tiredness I put down to age (!), my bleeding gums meant frequent trips to dentist who could find nothing wrong there. My migraines had changed but put that down to age too as well as the occasional nose bleed. I had regular checks for blood pressure and did get quite annoyed that it fluctuated so much no matter what I tried to stabilize it. It took a severe attack of gout to rout this thing out - blood tests of course. Then everything fell into place except the tiredness when talking to my haem who still after a year told me it had nothing to do with PRV!!! I ask you, sometimes I have wondered who is the expert now on this.
Something else I should like to share. The papers on PRV say that cause is unknown but possibly exposure to radiation or a virus may be the catalyst. Not knowingly have I been exposed to radiation but......about 12 years ago I had a terrible bout of flu which took weeks to get over (my only flu experience) I had severe chest problems afterwards and then something very weird. I lost the feeling in my toes and fingers and had a strange tingling sensation. Also very sensitive to hot and cold such as turning on taps etc. I went to see the GP a locum as it happened who told me that flu can affect the nerves as well as the muscles and she thought that is what had happened in my case. She did say she would make an appointment for me at a Neurological Hospital if I wished. I declined and just waited to see how long this strange thing lasted - in total about 4months before clearing completely. I jjust wonder was that the virus?
Regarding how rare it is - do either of you know anyone other than through this site with PRV, 'cos I don't.
Oh, I forgot to mention that I do know of someone who also has PRV - a relative by marriage who lives on the other side of the world was diagnosed quite recently. We were as surprised as each other to discover this coincidence. However, when this person related this to her haem apparently there was no surprise shown at all by him as he has over 50 patient with PRV. Does this mean it is more common in some different parts of the world, or maybe he is a specialist just for PRV rather than multi tasking like my haem.
hi linds, its me! From reading all the messages on this site and also on MPN-oz I'm beginning to think my Haema may have just told me he had 50 odd patients so I didn't feel alone/special/different or whatever. Thru MPn-oz I have been in touch with someone in QLD and she was equally surprised at th number of his patients. Maybe I'm misjudging him, don't know him very well, only seen him twice.
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Venesections making me feel worse.
