Sorry to pester you all again

Hello,

First I would like to wish everyone well and I hope the dark wet mornings are not getting everyone down :)

I really feel I am going to come across as a hypochondriac which is the last thing I want to do but I have been struggling terribly following confirmation of Polycythemia.

I am in the process of having regular Venesections and having my third one in six weeks tomorrow.

I had a bone marrow biopsy back in August 2016 but it failed to collect Trephine and I was told therefore was unlikely to be helpful in accessing the possibility of primary PV.

I am finding it very difficult to accept this due to how unwell I have been feeling and feel that I have exhausted all avenues.

My doctor is now only looking to sign me of work sick and can't really do anything else for me at this stage.

I do believe that everything is being done that can be done but I have a real gut feeling that the doctors are wrong and there is something else going on.

Does anyone happen to know if the BMB did not collect Trephine, would they have been able to identify if something else was wrong??

I seem to continually feel fatigued and go to bed at 9pm and can easily sleep till 1pm the following day and am ready for bed again by 9, have what seems to be a lump on the right side of my neck which doesn't hurt but I feel it every time I swallow and had this for almost a year.

I have a number of other things going on including ringing in the ears and extreme confusion (this worries me)

and it feels like I have had an electric shock as i'm tingling in the hands and lower legs all the time...in other words I'm having a bad day

15 Replies

oldest β€’ newest
  • Hello James,

    You are not coming across as a hypochondriac at all, we all understand how you feel as we all suffer with symptoms. I have asked the medical team for some advice and they have said that a trephine would not help to assess all those many symptoms. Of course PV could cause some of them, and they advise that you go to your doctor with a list of these symptoms. Hope you feel better soon. Maz

  • Hi James, you are not pestering anyone, this is what the forum is for and I'm sorry you are having such a horrible time!

    I think with the number of venesection so you have undergone you are bound to be fatigued so your body is telling you to rest so getting signed off work may not be a bad thing.

    If you have a lump anywhere please get it checked by your GP so you can rule out that worry. Drink plenty of fluid, eat healthy but with treats and allow your body and your mind to come to terms with your diagnosis and tests.

    I'm sorry I can't answe your question about the bone marrow test because although I've got PV, I have never undergone that test. You need an answer to your question re trephine which if you cannot get from your medics email Maz our editor, to see if she can get an answer from Professor Harrison. Then that will be another worry cancelled.

    The other symptoms you have (I get ringing in my ears too) but again you need reassurance and answers on that along with the tingling. I also get tingling but I also have osteoarthritis which leads to nerves being compressed giving me tingling sensations. I think you should visit your GP with a list including the tingling, ringing and also explain how anxious you are.

    All these worries cause fatigue as well as your PV. Maz may be able to connect you to a buddy who is in a similar situation to you but above all keep in touch, thinking about you - kindest regards Aime xx😺😺

  • Oops Maz and I were typing at the same time!

    Kind regards Aime

  • Thank you Maz,Aime

    I'm planning on paying the doctor a visit tomorrow morning with a list of everything and really hope they can help a little more.

    I already feel a little better just from getting it all of my chest.

  • That's good James. Insist on getting answers to your questions. I'm far more assertive now than I used to be!x Aime 😺😺

  • Hi James, please keep talking to us. I remember feeling exactly the same as you in the early days. I was fortunate to be diagnosed by and A&E consultant following a blood test in Sept 2015 in Leeds General Infirmary. I've never had a BMB, they diagnosed from a full blood count only. I did however get the test for the JAK2 gene (I am positive). This test takes a little while longer that a blood test to process though. Your symptoms are very familiar, probably to most of us on here. Though I have to say, that since going through a series of venesections in the initial few months, my bloods returned to acceptable levels and I felt much better. I have also been treated for anaemia, which seemed to be the source of my fatigue and brain fog. You don't mention which hospital you are at?

  • Hi James

    Never feel like you are pestering people its why we are all here.

    Regarding your diagnosis, have you been checked for the JAK2 gene mutation? This is present in 95% of people with PV.

    When you have had your venesections how have your blood counts been?

    They can have an effect of lowering you ferritin (iron) which can cause extreme tiredness, confusion etc.

    You can have low ferritin but not actually be anaemic but it can have the same effect as being anaemic.

    If you did have low ferritin its important you dont do anything to counter that as it will defeat the object of venesections but its good to know what you are dealing with, its something you can discuss with your consultant/gp.

    All the best

    Paul

  • Hi James. As Paul mentioned I think low ferratin will leave you fatigued and it seems nothing much that can be done about it. My consultant did say on Monday that if my haemacrit becomes low enough I will be able to be prescribed a very low dose iron pill. It is all a bit of a puzzle it seems. Good luck. Mal

  • Hi James, the best place to get any information is firstly your haemotologist and then here as those of us with PV will reassure you that most of the symptoms you are experiencing are part and parcel of the disease. The tingling in your limbs, hands and feet, the confusion and the fatigue are all part of the disease. What does concern me is the lump, that definitely should be checked out. Don't think you are being a nuisance, this is a frightening disease but you are not alone. Please get that lump checked asap. Xx

    Jill

  • Hi James,

    I have had more than my fair share of meltdowns, and I struggled when my ET changed to PV, please feel free to post what ever is relevant to you someone here will understand. I have been thoroughly tested and scanned and it is now clear all my symptoms are either the condition or side effects of medication, I have a lump in my neck which has reduced over the years, tingling/vibrating feelings in my arm and leg muscles, and the fatigue, I have had sessions with a health phycologist, and I now own my condition. Coming to terms with it is difficult. I wish you well.

    Good luck, and have fun.

    Ourlife

  • Hi again James, just looked back at your previous post and see that you are Jak2 neg, sorry, you must feel like you are repeating yourself. When you say possibility of primary PV, do you mean that secondary PV is confirmed but they cant confirm primary?

  • Hi James, never apologise, we are all in a similar boat, whether we like it or not, and sometimes we are happily sailing along forgetting about our woes, and sometimes we are struggling upstream and sometimes it feels without any oars.. we all have our ups and downs and living with a chronic illness is bloody hard (no pun intended) sometimes. I am actually starting a blog because of the general lack of understanding even from my good friends who think they are being helpful when they say things like have you checked your iron levels (argh!).. anyway I digress. This is about you not me! I firstly would ask, where are you based? As my first thought is to ask Prof Claire Harrison for a second opinion or at the very least get your consultant to chat with her, only the other month a young guy on here was being directed towards drug therapy and I suggested a second opinion with Claire, his consultant called her and she agreed to not proceed with the drug therapy. I also recommended a guy who is now a good friend as he was not getting the answers he needed. I have some more personal questions but would prefer if you want to chat via PM happy to do so, just about general age, lifestyle etc? Meanwhile, take care of yourself and listen to your body. I know sometimes it feels like the light at the end of the tunnel is so far away you will never reach it, but I promise you things will get better. Warm wishes, Louise

  • Thanks to everyone that replied to my post.

    I just typed a big response and then pressed back by mistake so have to start again :)

    I need to answer a few of your quesions.

    I'm based in Bristol and have been seing a hamotoligist at Southmead hospital.I had the JAK 2 blood test done which confirmed I don't have the gene mutation found in most people with PV but as they were not able to collect enough Trephine from bne marrow biopsy(bmb)they are not able to confirm if I have primary PV at this stage(i have been advised you can find out this out without a bmb but he disagrees)

    Late last year they mentioned they might have to do the bmb again but he is reluctant to do it now and I am being treated with venusections and he has told me that my bloods are going in the right direction and I have another appointment in 3 weeks which is great as I only saw him 2 weeks ago.

    I went to see my GP this morning and explained again how I have been feeling and she thinks the lump(which is not visable but I feel it when I swallow)could be either due to one of the bp tablets i'm taking called ramapril or to do with heart burn that I might not even know I have so has given me tablets along with vitamin d as my level was slightly low but not cause for alarm.

    I do think everyone is doing what they can but I also don't think I can get across how much I have been suffering with this.

    Always have a big smile on my face and refuse to get down about this but I have noticed such a change in everything I do but am sure once the blood levels are under full control I'll be ok.

  • We are here for you..there are alot of people on this wonderful website!! I have had alot of people based in U.K. help me. Bless you James I will say a prayer tonight for you..from the U.S.A. I wish a good-evening.

  • Dear James,I can only say these conditions are not very accurate but that is due to the fact that these Cancers which is really still considered rare, as all forms of these MPN's due not still have a cure,just treatments ..on this note I do not believe you are pestering anone,at least not in my experiences dealing with my struggles since 2008 and I have Myelofibrosis since 2016.Hang in there and mayby try a different Oncologist if at all possible,however my personal thoughts on treatments for me were as little as possible in regards to chemotherapies and Radiotion therapies, with that said please don't forget..you are not alone..I am the USA and sought lot's of comfort with the only site available anywhere..Chin up hope this helps

You may also like...