Polycythemia Vera

3 Posts | Page(s): 1 

Polycythemia Vera

by SabrinaB13 on Wed May 24, 2017 06:06 AM

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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. 

RE: Polycythemia Vera

by nanc24u on Wed Aug 09, 2017 11:52 PM

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On May 24, 2017 6:06 AM SabrinaB13 wrote:

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. 

I also have PV and was dx august 2015. I have some of the same symptoms you have but not all.

How are they treating your PV? Are you on any medication for this? Are you getting Phelbotomy"s done? Do you take a baby aspirin everyday? You also need to drink a lot of water everyday to help keep your blood thin. Exercise is important also to keep the blood circulating. Have you had a bone marrow biopsy done? You need to get to a doctor that knows how to treat this and soon. If you HCT in your gets to high you can develope bloods clots that can go anywhere and caause heart attack or stroke so I can't stress enough the importance of see a hemotolgidt/onogolist as soon as possible. Once the get your numbers down you should start feeling better.

You should be going to a MPN cancer Specialist for this. Most regular doctor have never even seen a case of PV let alone treated it.

There is also another group on facebook that is set up for just PV people. it has given me so much knowledge and answered so maany of my questions. sign on to FB than type in the search bar polycythemia Vera group and ask to join the group. You wont regret it because people from everywhere with this disease are there .

I would also get a second opinion because PV is not simple to dx. There certain criteria that has to be met.

Good Luck and God Bless

Nancy

RE: Polycythemia Vera

by Moanddj on Sat Aug 12, 2017 02:59 PM

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My son is 9 he has been diagnosed with polycythemia Vera since he was 3.his symptoms he used to cry alot and he could not catch his breath especially while laying down as a baby we would prop him up...he turns blue in severe heat as well as severe cold..he has indigestion issues daily his skin itches all over. We cannot find a doctor that will take a look at him his current oncologist does not recommend any  phlebotomy at this time no services just Tylenol for daily pain and ...I am reaching out for any resources. He is miserable he has gray hair in back of his head. Lots of headaches. Thank you any other young patients out there?

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