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Parkinson's & PRV - does anyone else have both these?

Posted , 4 users are following.

alison_29881
alison_29881

I was diagnosed with Parkinsons 18 months ago. After a routine blood test I have now been told I have PRV. I had one venesection and am on aspirin. I read that PD patients have too much iron. How would this relate to PRV? Also from what I read both conditions have low Vitamin D. Why don't they tell you to boost this? Should I get a vitamin blood test?

0 likes, 8 replies

8 Replies

  • clem19079
    clem19079 alison_29881

    Posted

    For quite a while I was being treated for PVR, I am not a 100% sure but I think it can be cured by giving up alcohol and ciggies. The symptoms are the same as PL though PL can only hopefully be controlled. They both leave you low in iron they both leave you with a vitamin deficiency, hence the symptoms of restless leg and lethargy as well as itching. As for being low in iron it's just one of those things that PV suffers have to endure. I think the same can be said of you, though you will Most likely have to endure venesection (pint of blood off). If I am wrong about certain aspects , I am sure some of the good folk on here will give a more accurate appraisal. Sorry about parkinsonism, best wishes.
    • alison_29881
      alison_29881 clem19079

      Posted

      Thanks for your reply. I have never smoked, and alcohol intake is probably not high enough! ;-)  I'm not low in iron, but worried that I have too much. I do get restless legs but thought that was a Parkinsons symptom - but could be both.
  • paul250360
    paul250360 alison_29881

    Posted

    Sorry to hear about your double whammy. However, re iron levels, l was told not to be too concerned. A normal balanced diet has all the iron your body needs. l notice many post on PV mention cigarettes and alcohol. Whilst cigarettes are a definite no no for everybody as far l am concerned I've not heard from any medical practitioner that alcohol in moderation is also a no no. l enjoy a couple of beers on a weekend and have no intention in abstaining from this pleasure.

    l also exercise every day and haven't had any adverse effects from my PV that l've had for 25 years.

    • alison_29881
      alison_29881 paul250360

      Posted

      Hi Paul  Thanks for replying. It's not being LOW in iron I'm concerned about - it's having too much! And as for cigs (never smoked) and alcohol (in moderation).  Just wondered if I should be on vitamin D.  Might give it a go.  I take ginseng and also heard ginger was good.  I have recently started 3 x a week at the gym and though I'm unsure how it's affecting my PRV I have noticed significant movement improvement for my Parkinsons.
    • paul250360
      paul250360 alison_29881

      Posted

      Hi Alison

      Just to clarify what l said about iron. My advice from my oncologist many years ago was to eat a normal balanced diet. The amount of iron consumed in a normal diet is minimal and wouldn't increase abnormally the high amount of iron as a result of having PRV. You'd have to 3 meals a day of spinach or the like to do that !!

      My treatment which has not changed over 25 years is a 3 monthly venisection and a daily low dose aspirin.

      l also aim to walk +10kms a day and am considering a return to playing basketball (age 55) after rupturing my achilles 5 years ago whilst playing.

  • sheltielife
    sheltielife alison_29881

    Posted

    I have PRV but secondary I am told. I have very poor skin on my feet it peels off and is very cracked. I have been told that Vit D would help this and from reading that people with PRV tend to have Low Vit D I am just wondering if it would help me?
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