Polycythemia

[nadine0913]

I have been ill for quite some time now.  I've had a whole slew of symptoms that my doctor hasn't been able to get to the bottom of.  I've been suffering from hypertension for 10 years now and am a chronic hepatitis b carrier.  My mom had an active case when I was born over 48 years ago so I'm assuming that's where mine came from.  Up until recently I'd been pretty healthy.  However, for about 6 months I've been experiencing chronic fatigue, night sweats, bloating in my stomach - it feels like I'm pregnant but I had my tubes tied, chest pain, chronic pain on my right side that seems to worsen at night, dark urine, blood after BMs periodically, joint pain, daily headaches, nausea, chronically thirsty.  They're also trying to confirm that I have COPD because I have such shortness of breath but my oxygen level is good - in the upper 90s.  Had a pulmonary function test and am supposed to get the results today.  In August, my headache was so bad that I cried for hours.  It finally went away but I was in bed for days because I just didn't feel well.  Then in December I had 3 episodes where I felt like I was going to pass out and nauseous.  I checked my blood pressure because I was at the grocery store.  Once it was extremely high 160/100 and another time it was 90/70.  I am taking blood pressure medicine.  Anyway my doctor did some bloodwork and my red blood cell count is high 16.7.  She referred me to a hematologist which I haven't seen yet to see if I have polycythemia.  Then I was watching mystery diagnosis on discovery last night and saw an episode about someone with some form of Budd-Chiari syndrome (I think - can't find the episode on the link).  Those sympstoms really hit home for me.  The lady was plagued by headaches and dizziness.  She kept going to the emergency room.  They'd rehydrate her and she felt better for a bit but the symptoms always returned.  Anyway they finally did an MRI and discovered that she'd had a couple of strokes that did no lasting damage.  I can't help but wonder if I had strokes too when I had those episodes in December.  I called the medical exchange because I know strokes in women don't manifest themselves the same way as they do in men.  I realize mine is a complicated case but I'd definitely appreciate any input that you can provide.  Also as far as my weight goes, I am not overweight - 5'3" and 118 pounds but I have gained 8 pounds within the last 6 months and haven't eaten anymore than I normally do.  In fact I've been eating less because I feel so bloated and full all of the time and can't eat very  much when I do eat.

[Gini_S]

Hi!  I am in somewhat of a limbo with diagnosis as you are only I'm stuck in a nursing home that is extremely slow about getting me the appointment with my Main doctor and a HEMATOLOGIST at my research hospital.  Your HEMATOLOGIST  would need to send a blood sample and toenail clippings to Mt Sinai Hospital in NY,NY where they have a tissue bank for Polycythemia vera specifically asking them to test for it as it is a rare blood disorder that is a mutation of a gene called JAK2.  It is currently being studied on very few hospitals around the world. I would trust the ones who are studying it.
  You may not have it but if you do then, like me, get involved and research!  Call the hospitals, the researchers, the labs that are working on a cure for it.
  There are promising treatments but no one is looking at using hyperbaric oxygen before or after using stem cell treatments using donor cells of younger people who are healthy and do not have the gene mutation.
  They are, also, not even touching the theory that the mutation may come from too many xrays or CT scans much less from eating  GMO foods, living near highly unnatural  chemically treated farmlands such as we are finding in the farmlands near the waterways in Central Florida,  What about the toxic chemicals in tap water or even leaching from the plastic bottles we get the Spring water in? We didn't have this mutation before then.  We may have had other blood clotting disorders besides this.  
Don't test in the labs that are guessing at PV.  Send it to the 2 on either coast who will specifically do the genetic testing for specifically PV to  either get the positive confirming diagnosis or rule it out and get to what it is.
  Meanwhile, look at what the Do's and Don'ts of PV are by going to the MPN Research website and follow the rules that are known.  (See http://www.mpnresearchfoundation.org/)
  Best of luck to you!  Hope that you don't have it!

[KjFlicka]

Have you had your liver panel done because of the Hep B? Viral Hepatitis is a common cause for liver disfunction and damage. I'm curious if the all the weight gain you mention (the 8 lbs or so) has seemed to have gone to your belly??  I had Hep B as a kid, it lead to an extra sensitive liver and, paired with alcohol, rewarded me with cirrhosis at age 34!

I'm sorry I can't address all your symptoms as I only really have experience myself with liver and pancreas stuff. Please do let me know if you have any questions about those, though.

Hopefully someone else here can provide some more input for you!

Take care!