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Blood and Blood Vessel Message Board


Blood and Blood Vessel Board Index


I'm new here and just posted this reply in another thread. I thought maybe someone here could shed some light or offer suggestions for something that has bothered me for years............

I'm undx and really getting P-Oed with my doctors. They look at me (33 year old mother of two) and are convinced I'm not "consistant" with the diagnosis of PV.

I've been an Enigma for too long and the problems I face now are too real...I've already at some time previously suffered from a stroke..not TIA a stroke probable my best guess is at age 28. I had trouble with one arm for months (still have that) a left sided visual field loss and nerve pain, muscle spasms etc from residuals of the stroke.

That's the end result in my opinion of PV.

Let me share with you my Labs.

Since 1994 I've had elevated WBC currently 18.8
they say the differential is normal but it has changed with Eosoniphilia, Lymphocytosis and Granulocytosis.

RBC is usually somewhere around 5.49
HCT 16.9
HGB 48.5
MCH is hish at 31.1
RDW is low at 11.3

LFT's
ALP (alkaline phosphatase ranges but always high)
140-195

I have previously had an enlarged spleen and now have both enlarged spleen and liver

Of course the stroke.

I get every last symptom you all descibe in addition the itching is terrible (especially following a warm bath/shower)

I get petechiae often, have seen it in the hospital and still have no answer. Bleeding gums, nose, heavy clotting and bleeding during meses you all get the pic. bruising, bone pain, headaches, fatigue, night sweats and occasionally pneumonia.

I'm on aspirin therapy, but my PCP told me to donate blood as my differential suggests no infection...I always have a problem when they are finished screening me for whatever it is they do and they tell me they can't take my blood (and I'm O- to boot)

I know in the near future I'll need to have an LP and/or Bone Marrow check. I'm not dreading these, but I haven't had an EPO or CR51 test for PV.

I was told my Leukocytosis is unconstitutional and probably normal for me.

My problem or question I have is.....Everywhere I read about petechiae and enlarged spleen etc (usually it is caused by low platelets right?)

My platelets fluctuate depending on my period and range on the high end of normal to a high level alltogether.

I thought an enlarged spleen would chew up plates and the petechiae was caused by thromcytopenia, I have thrombocytosis (mild) like 420 mid cycle and 375 during my period this has been consistant for years.

No one can answer my concerns or questions...They all just feed me more drugs, right now, aspirin, Lortab, Magnesium-malate, Dex-Alone, Ambien, Klonopin, Remeron should I go on.....

Sorry to ramble, you guys know your stuff, why is so hard for them to say yes or no...I was told it was secondary due to my smoking,,, smoking doesn't cause leukocytosis or spleen enlargement so what gives?

anyway, I'm seeing a neurologist for my cerebral artery occlusion, my hearts fine and coagulation system....too me, just too much blood simple right, wrong!!

They are also questioning if my stroke is actually Multiple Sclerosis....never ends...oops
forgot to mention my BP has never been under 140/95 and has recently been as high as 162/105...my heart rate resting is 139 bpm at sleep it's around 99.
I have had some palpatations or ectopic beats as they call them but they say my heart is fine.

My Mother died of Cancer (spindle cell of the retroperitoneam) when I four (she was 40)...my dad, my brother and his brother all had their first MI's at 42 with angio and stents....The gene pool is looking pretty grim....

My other "medical" diagnosis include surgery for abdominal wall muscle tumors (endometriomas) adhesions and abdominal scar tissue, adhered bowel, previous stroke (or possible MS), skin conditions previously like pityriasis rosea, now prurigo nodularis (allthough this biopsy say to far ulcerated for definitive I think it's PLEVA), peripheral neuropathy, myalgia, neuralgia and arthralgia, petechiae (recurrent), enlarged spleen and liver that's enough.

I currently see a neuro-opthamologist, neurologist, PCP, psychiatrist, dermatologist, pain-clinic and physical therapy..I think that's it...enough I know.

Thanks in advance.

Take Care and God Bless





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