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polycythaemia (too many red blood cells)

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shona Newbie Posts: 5 From:U.K. Registered: Jan 2003	posted 01-16-2003 08:58 AM I am a 37 year old female, recently diagnosed with a blood disorder (polycythaemia - too many red blood cells). It is very rare, (how lucky am I)! and am finding it difficult to contact other sufferers. If you have any experience of this plse reply. Thanks shona IP: Logged
shona Newbie Posts: 5 From:U.K. Registered: Jan 2003	posted 02-01-2003 03:49 PM Cedric, Thanks for your reply, I have just had a blood count test, which I believe should have been done earlier. I was diagnosed with polycythaemia in November, I was devastated, after reading literature on the internet. The specialist arranged a blood count test after several normal blood tests and other tests. The blood count revealed that I actually have pseudopolycythaemia !! I am still trying to work out what I actually have. She told me to stop smoking, and discharged me. I am now worried that in years to come I could develop real polycythaemia and not know. My main symptom was facial flushing, this is why I went to the doctor's in the first place. This I believe is a common symptom, however, the specialist told me this was coincidental, and to visit a dermatologist. If you have any views/opinions on flushing or pseudopolycythaemia, I would be really grateful. Thanks again. Shona IP: Logged
Gine2D Senior Member Posts: 225 From:Myrtle Beach, SC, USA Registered: Feb 2003	posted 03-25-2003 01:40 AM Polycythemia occurs in about 2 people per 100,000. I have had it for about 5 years. If not treated it can cause death, stroke, brain & muscle damage. Get it stablized & bleed out pint every couple of months under a doctors care. G IP: Logged
janetm Newbie Posts: 2 From:US Registered: Mar 2003	posted 03-29-2003 02:55 PM I have had polycythemia (what is the correct spelling anyhow?) for a couple of years and had been phlebotomized every other month during the first year. Then I quit smoking and it made a world of difference. Now I only have to be tested once a year. It is under control and I'm happy. J IP: Logged
tjokro234 Junior Member Posts: 18 From: Registered: Apr 2003	posted 04-02-2003 02:01 AM i've had polycythemia vera for almost 3 years now. first 1.5 years were okay - every couple months i needed to get phelebotomy done and then went downhill starting early last year. Don't know what the causes were, but i had about 5 pints taken out in a 6 week time due to continued headaches....suddenly, the phlebotmies pushed my hematocrit level to about 35% level (normally needs to be around 45%) and was hospitalized... to make things worse, my blood pressure is down to 100-105lvl/70 (hypotension)...don't know if PV was the cause of this. my current symptoms only lightheaded and dizzy spells sometimes. What I can advice is to get a good hematologist and get it checked early enough. If you need more proof that you got the illness, you may want to get a bone marrow analysis done at the doc's office. Sometimes people with high hemoglobin count does not mean you have polycythemia. Hope this helps... IP: Logged
bobgure Member Posts: 23 From: Registered: Apr 2003	posted 05-24-2003 12:34 PM Yes, Yes, Yes. I was diagnosed with Polycythemia 2 years ago. I get phleb'ed every few weeks if my CRT is too high (approaching 50)---distressing when it's done in the chemo room. They still can't tell if it's 'Primary' or 'Secondary' Polycy. What has helped to keep my crit down(lately around 43-44) is aerobic exercise, ALOT of water (about a half gallon or more a day) green juices, nettles and large doses of VitC. SMOKING must be stopped immediately. This much I know. Yes, there can be complications. Try to do things that are affirming rather than do what I did...search out every horrible possibility and worse case outcome from Net Med sources. I just end up terrifying myself, which is not good and causes needless anxiety. How do I benefit from that?! Get educated, and take healthy action. Breathing and relaxation exercises (Yoga type stuff) helps alot to regulate Oxygen. I've found it helpful to help with anxiety as well. Bon chance. My heart goes out to you....I'm not pleased with having this. I have other stuff going on as well. My body is telling me "TAKE care of me..pleeease." The choice I need to make is, am I willing to listen to it and respect the reality that's presented. Yes, it does indeed suck. What can <I> do to make myself comfortable? What can I eliminate in my life that's aggrovating things? How can I optimize my health? Can I commit, one day at a time to optimizing in a gentle way? Being kind to myself is the most important thing. This doesn't come easily...I am frightened of the 'possibilities'....but I try to stay in the NOW moment which is all there really is! Bob IP: Logged
valger Senior Member Posts: 172 From:The Woodlands, Texas Registered: Mar 2002	posted 05-27-2003 05:31 PM Hi all, can someone tell me what are the abnormal blood tests that would indicate this? I had a high red blood cell count (only one point over) and a high sed rate (38) in a range of 0-20. I was wondering if this could mean something serious. My white blood cell count was ok, and pretty much everything else, but just the RBC was 5.32 in a range of 3.82-5.30. Just wondering if anyone could shed any light on this. Thanks so much for any help!! Val IP: Logged

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