I was diagnosed with Polycythemia Vera in 2002 but I feel I have had it for many years before diagnosis due to the symptoms of being a hot sleeper at night, itchy skin, cramp, lots of nose bleeds since I was as young as 15 years old and I am now currently 57 years.
The reason it was discovered was due to my suffering severe cramps all my life. I have been to over 50 doctors to try a find the cause of these cramps with everyone prescribing salt tablets to many other things but no one could get to the cause.
I was a champion sprinter in my school years and when I was 18 years old I was the fastest in Australia for my age group and was only .9 of a second outside the Olympic world record for the men’s 200m. In 1981 I won the 100m, 200m, and 400m races at our GPS school level track and field meeting but that night I had very severe cramps in the front and back of my upper leg muscles all at the same time.
In 2002 I was working as a scuba diving instructor in Cairns North Qld and I had to perform a in-water rescue on a panicky scuba diver and ended up getting cramps in both legs, I nearly drowned saving the person. This was the catalyst for me really pursuing diagnosis and treatment.
Luckily, I was able to find a Doctor who specialised in sports medicine and he was extremely interested to find the cause of the cramps. After much research he came upon Polycythemia Rubra Vera as it was known then, I had a bone marrow biopsy to confirm this. The oncologist gave me 2-3 years max to live but here I am 19 years later.
I suffer from the following symptoms:
- Severe cramps since 15 years old.
- Ruddy skin on my face.
- Itchy skin especially after a shower.
- High body temperature especially at night.
- Tinnitus.
- Bleeding from gums.
- Enlarged bruising areas.
- Occasional chest pain.
- I cut and bleed very easily.
- Gout and arthritis pain.
- Pain in right foot toe and ball of same foot.
- Insomnia.
- High haemoglobin levels.
- Numbness and tingling in arms and legs.
- Slight breathing problems at night or lying down.
- I also suffer from Raynaud’s syndrome even at air temperatures of 15 degrees Celsius.
I had seven venesections in seven days when first diagnosed to get my haemoglobin levels down to 160 g/l. I currently have a venesection about every 8-10 weeks to keep it at this level.
My iron levels used to be small problem but I control this now by taking Cacao powder. If you do not know about this super food it contains the highest plant based source of iron at 7.3 mg per 100g and beef only has 2.5mg per 100g. It is also the highest plant source of magnesium and really helps my cramps. The other health benefits are amazing from this plant. I have a hot milk with Cacao powder every night.
I only need the venesections to control the PV at this time and the main indicators of requiring a venesection are the ruddy skin on face and cramps.
I hope my story will give everyone who has this disease some hope that most people will live for many years and the research keeps getting reviewed and a better prognosis all the time.
Sam,
aged 57 years, 2021
