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One more test to go

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ellen68007
ellen68007

To my very supportive friends on this forum. Just an update to my blood disorder. The Hemotologist ordered 3 more tests before a final diagnosis can be made. I had the sleep apnea test and the heart ultra sound. I see the Hemotologist on Friday. The last test she wanted was a plumatory test. That is not booked until after I see her. Tried to bump it up. So did my Doctor but no luck. I have had some new symptoms since the Hemotologist wanted phlebotomys put on hold until these tests are complete. All other tests including bone marrow aspiration have not given a solid confirmation of PV as much as she feels it is. My new symptoms are a burning yet itchy feeling on the top of my feet and have had a bloody nose. First time in years. No energy and feeling so tired and get a dizzy feeling at times. Ok my friends will keep you posted. Need your input. Thanks for reading and listening. Ellen from Canada

0 likes, 8 replies

8 Replies

  • clem19079
    clem19079 ellen68007

    Posted

    Whenever your actual treatment starts ur symptoms will hope fully start to subside. At the min I am on aspirin, hayfever drug ( for itiching) hydroxerea and occasionally I get a pint off. Experience tells me that over the counter hayfever tablets are useless ( in Ireland anyway). We know what your going through. For yrs folk thought I was laying it on when I couldn't get up for work or complete a job either menial or the ability to concentrate on a task. I have felt unwell most of my life and life has only been a bit more tolerable since my treatment started. Lately I have been very restless and not sleeping much. But at least I am feeling a lot better than I did in the bad ole days. Best wishes Ellen , my thoughts are with you. Ps do you drink or smoke? If so their habits that make a bad situation worse. I stopped both. Feel ashamed to call myself a Irishman 😊
    • ellen68007
      ellen68007 clem19079

      Posted

      Clem in answer to your question if I drink or smoke. I gave up smoking 7 years ago. I do have wine with my dinner. Now when I say wine with dinner, I have one before dinner and one with dinner but I have told this to each Doctor I have seen because like you they all have asked. There was never one Doctor say not to have wine. I noticed you are Irish. I actually have had two Doctors tell me this is a rare blood disorder and it tends to be more common in a Northern Europe ancestry. Primarily Ireland and Scottland. I have been asked my ancestory twice from 2 of the Doctors and told them my parents were from Scotland. Aberdeen. I have never read this nor know this is a statistic or not. Have you head of this genetic link?

      Take care and an update soon.

      Ellen

    • clem19079
      clem19079 ellen68007

      Posted

      About the smoking n drinking. PVR is allegedly caused by smoking and drinking. PV on the other hand is genitic.

      Both are exacerbated by booze n smokes. , as they sick up what little air your breathing. 1 or the other disceases are usually found in people who live at very high alitude, doesn't seem to bother them as far as I know.. hot shower or hot bath can make u very itchy , so stick to cool water if u can.

  • peter98873
    peter98873 ellen68007

    Posted

    Hi Ellen.  Good to hear you are making progress.  It is amazing just how variable PVR can be, the strands seem to be endless.  If you get a chance have a look at this (Patient) web-site information section, for PV.  It is a bit medically orientated but if you  follow it through you will learn a lot about your condition and where it is likely to take you.  Trust you are happy with your progress as far as can be expected.  Seems like your patience is being put very much to the test.  Wish you well.
  • harrishill1
    harrishill1 ellen68007

    Posted

    Hi Ellen. I too was from Canada. I now live in California. Used to live in Fort Frances, and then Thunder Bay. Where in Canada are you? You certainly have some symptoms of PV. Bloody nose, and itchy skin. I am now age 74, and still feel pretty good, exercise daily, also do zumba 4 times a week. I have read that we can live a normal life span with PV. Hang in there.

    Harris

    • clem19079
      clem19079 harrishill1

      Posted

      I concur, it's not a death sentence. I have had this disease all my life. I never refer to it as cancer, but when asked I say there's a chance of getting leukemia, but then again getting out of bed in the mornings is a risk. Good post, girl needs reassurance despite doctors gloomy comment ( that they always like to share. ). Best wishes
    • ellen68007
      ellen68007 harrishill1

      Posted

      Hi there! I live in Ontario. I agree that as much as I am not a Doctor that I have PV. As much as the JAC came back as a negative and to date all tests are fine except for my blood work indicating a high level that was the reason for the 2 phlebotomys. I get the results of the sleep apnea test on Thursday and the Doctor there told me he would give me the results to take to the Hemotologist in London on Friday. I have not had a phlebotomy in almost 2 months. The Hemotologist asked not to have any until she has a final diagnoses. Friday can't get here fast enough. There will still be one outstanding test (the plumonary) breathing test which I don't have for 2 more weeks. The ultra sound on my heart was done last week. I see my primary Doctor tomorrow for a Vitamin B-12 injection. Hoping it gives me a bit more energy. I have been feeling tired. It will be interesting to see what the Hemotologist says about the Doctor in emerg Dec. 23rd put me on blood thinners and tool me off the aspirin regiment she put me on. Will be sure to keep my friends here posted. It's been a great help to me not having anyone to share this illness with. Nobody I talk to has even heard of it so this is an amazing support group!
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