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SabrinaB13's Message Board Messages

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Polycythemia Vera

by SabrinaB13 - May 24, 2017

I'm new here and was needing information/advice on polycythemia vera. I was diagnosed almost two months ago, well my doctor didnt even tell me I had to read it in my appointment summary paperwork. Im 35 I have insulin resistant type II diabetes, high bp and cholesterol, polycystic ovarian syndrome, coronary artery disease, decreased kidney functions, moderately severe asthma,  pretty bad allergies to medications/environmental,and now the PV. I have been researching it since I found out. I have had the symptoms of it for over three years now but they always told me it was caused by the diabetes and other health issues. Three years ago I started having problems remembering things and getting confused very easily then the chronic headaches started. When the headaches start my vision gets blurry or I have blind spots in my vision. Told my doc she didn't seem concerned performed a memory test and checked my feet. I have a burning stinging feeling in my hands and feet to the point it keeps me up most nights. I have had a headache for months now that never fully goes away. I always chalked up the breathing issue to asthma since I was diagnosed with it as a child but now realize it could be caused by the PV because 95% of the times it happens when I'm laying down or I wake up thinking it's an asthma attack but my inhaler doesn't seem to help. Anytime I take a hot bath or get overheated I break out into hives and the itching is horrible and nothing really helps. I am in a lot of pain that even hydrocodone doesn't stop it, it takes the edge off that's about it. I ended up losing my job recently because working on my feet and lifting cases of water, bags of cat/dog food for 7 hours everyday was too much for my body to handle. If I sit to long my hips, legs, and feet hurt something awful.  Every joint in my body hurts to the point by the time I would clock out I was in tears from the pain. I have chest pain constantly and I think my spleen may be enlarged because the area is very tender and sore. To be honest I'm pissed that my doc didn't tell me I have this PV which will be taken up with her at my next appointment in a few weeks. I'm also terrified because well this is scary stuff especially with the other health problems I have. I'm tired of the pain, the mental and physical exhaustion. How am I suppose to function and work because some days I wake up and I feel okay, which is not very many days and most days I'm in so much pain I take aspirin and ibuprofen then have to wait until it kicks in before I can even get out of bed. Idk what to do at this point. Is there a specialist I can request to see or treatment options I should request. I have to be able to work but at this point it's very difficult and I do not qualify for disability because I do not have enough work credits in WV to qualify for it so not working is not an option. I just need advice/opinions. I would greatly appreciate any input. 

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