Good afternoon my MPN family. I went to the consultant yesterday for results of my MRI scan on my brain (they found one by the way and everything was okay). I saw someone who I have never seen before who told me my ferrous levels were low and wanted to prescribe me iron! My jaw fell to the floor. I told him "You do realise that Iron increases red blood cell count and that I was on medication and venous sections to reduce the count". He looked trifely embarrassed while I look stunned.
Today I saw the pain management consultant who went on and on about controlling pain through the mind and that depression exacerbates pain. I had to stop him mid flow and I told him about all my fellow sufferers on this site and that joint pain is commonplace for sufferers of MPN disorders. I am really tired of doctors brushing my pain aside because they don't know the cause. Bloody believe me when i tell you that we DO suffer pain as part of this condition. Grrrrrrrrrrrrrrr rant over xx
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jillydabrat
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It is amazing how quick Drs link our condition to depression, I know we all deal with the mental side differently, I think we are aloud to feel angry frustrated and all other emotions but like going on holiday you can't stay there for ever ! I have recently had my own little meltdown but am back on the positive side (for now) sounds like you stood up for your self, you have the right to a second opinion if you think your Dr is not listening.
Rant away, you have every reason, but do agree re second opinion, if you felt that might just help....you are one v v v brave lady! Thinking of you so much. Tinkerbell13
I think the problem is they see an issue and feel they need to fix it and dont always consider what that may end up doing.
I have had my own fair share of frustrations especially as under both Haematology and Heptology, thankfully my haematologist is consulted so he keeps an eye on things.
I have been given iron before when my ferritin levels have been low and i have been anaemic, just a short spell on them to give me a boost. I dont think its too unusual but depends on the total blood counts...if you have become anaemic and your ferritin is really low then even with PV you could become more anaemic which is no good either.
I would certainly not however do anything without your main consultant saying so.
I'm sorry you are not being listened to very well, hope the rant helps!! I have developed low ferritin and the doctors were reluctant to do anything, however as it has now dropped my Hb they have very cautiously put me on iron, so it can happen. I think the important thing is feeling that your doctors are aware of mpn and how it affects us individually - and that they are listening to us. Good luck in the future. Fee
One of the problems that doctors in general have is that they have a patient in front of them who they know has come to them for help and advice. Sometimes I think they clutch at straws when they can't give us answers! We, of course, catch them out when the straw they clutch seems proposterous or even dangerous! That is why it is vital that we are educated about our conditions and be prepared to speak out when necessary as you obviously did! The doctor I respect most is the one who admits he doesn't know the answer instead of clutching at the straw, especially if he/she follows that up with but I will try and find out for you! Not many are prepared to do that though. Best wishes to you and we really don't mind when you need to rant. Jan
I actually took a copy of the messages on here to my consultant when I put a post on about slurring speech because she had shrugged her shoulders and couldn't understand why I was having these symptoms. I left it with the registrar and asked him to pass it on to show her that it wasn't just me, that it was a problem suffered by many MPN sufferers. I think it is about time all the experts sat down and looked at how many people are suffering from symptoms like slurred speech, painful joints, etc., instead of just looking at the cause of the illness. Nothing annoys me more than trying to put my case forward and getting her to believe me rather than getting the look that she thinks I am completely mad. I haven't been to a forum yet, am waiting for the date of the North East one but all those who are going should ask for their symptoms to be collated and recognised.
I just about lost the plot with a registrar who was holding a joint clinic with my usual consultant haematologist. He asked how I was feeling so I said not too bad apart from the fatigue. He told me I shouldn't be fatigued due to my ET.
I was upset, frustrated and angry. One of the most debilitating aspects of this condition is chronic fatigue. As a haematologist I thought he would have known that.
If I want to discuss a symptom I print off the relevant discussion from here to show them that it is common place with this condition as he can see from all the people who have spoken about it on MPN voice. That usually makes him/her take note. It's about time the consultants listened to their patients symptoms it is after all us that are suffering them. Xx
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