i have been living with this for 2yrs now and i must say with no help from my doctors, i know its rare and not many women suffer with it but are there any on here ? am getting a bit desperate now feeling really un well
thanks
What part of the world are you in?
uk unfortunately
Hydrea and Asprin are what I take I also from time to time get venesected a pint at times. Tell your doctor to refer you , in fact demand it. Hydrea is a chemo drug. Your symptoms can be eased not cured. If you smoke or drink you have to quit. I liked my brandy now I no longer miss it. Find out why your doctor is taking risks with your health. Do not take no for an answer. Pv can create all kinds of problems for you. If you don't get satisfaction change your gP . I'mean in Belfast and I have no choice but to attend hospital every 6 wKs. Let me know how you get on. Feel free to ask I will reply as best I can. Take care
Hi I am living in UK as well. I have had PVR for 2 years as well so know what you are going through. Have you been having vena sections?I am taking medication every other day now and although feeling very tired am still working full time. How are you doing?
Hi whilst answering you I see you have already answered most questions
Bain of my life. It has created all kinds of problems for me. I was born with it and for yrs i couldn't figure out why I couldn't hold down a job. Headaches all the time tired just been diagnosed with carpel tunnel and I may have diabetes as well. But I keep smiling.
Have PV for over 3years As clem 17079 hydrea urea and warfarin also vena section as necessary. The trouble is that the consultants are not sure of the way the Jak mutation works. They control the red cell count and the platelet count and seem to leave the many and varied side effects to GPs who can be not up to speed with this illness.My side effects also varies from to week for no apparent reason. These include aching lower legs, tingling restless legs, itching especially in bed bad enought to lead to no sleep. My GP is very good and prepared to try to solve the problems. I know that there are ladies on the forums and they will respond in time. I agree with clem19079 that you should be seen by a consultant. I'm sorry that your illness is getting you down but people on the forums could help. All the best for now.
Here I hope is the answer to your prayers for restless leg. Until your doctor prescribes quinine you can get it via Schweppes tonic water has to be genuine Schweppes as it has quinine in it. Over the day drink a bottle of it Everyday. Another thing I learned and was taking this as well , French mustard. Try one or other or both. They bloody hard work getting down but believe it or not , for me it worked now I on quinine. My leg still feel a bit stiff but better that than what you going through. Also basin of water as hot and as long a you need to . Hope this helps
i havent answered any anne think that was clem lol i am on asprin and blood taking, but feel so ill had a head pressure now for nearly 3 weeks, i am self employed so have to work to earn the money but my god its hard at the min
thanks james am under a consultant but he does not seem to know much and i always see his under study, its this bloody headache or pressure in my head its doing my head in now, i am on asprin and blood letting, can i ask what level with you do they take blood out of you ?
I will try the tonic (no gin) water. I downloaded the MPN update newsletter and on it gives you an idea of the work and studies being done
I only query things as they happen to me. I don't really wanna know.
I get those headaches bloody awful, tried everything , amazingly the only thing I take that works is neuropHen. 2 or 3 headache gone in under an hour. If they work keep a strip with you at all times .
Whenever the red cell count is at .45 or above they take blood. I understand that for females it is .41. What does GP say about your headaches?
I do know the feeling but the damned itch at night is really annoying. Taking sleeping tablets leaves me off colour the following day. My high blood was missed for a month during which I had phlebitis cellulitis and finally DVT then it was diagnosed
He thinks their linked to vertigo. I know a few folk with vertigo when I mention the headaches they say they don't get them. I'm on a lot of high strength pain relief. So was surprised when over the counter neurophen took the presure oft. It's gross , feels like my brain trying to get out through my skull. Very nasty
For the weird feeling in my feet and lower legs I was referred to a neurologist and had tests done and showed up damage to nerves in legs feet and hands. During meeting with the consultant he did another few tests and told me that my sense of balance was affected.
Ceterizine is a hayfever tablet. I take 2 per day. Helps keep the itching at bay. I also take gabardine on for nerve pain. Get that pretty much all over
I know what it's like.