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Anybody out there like me? After 15 years of knee pains and 3 ortho doctors who did little to inform me or help, a hemorrhage in the knee while in an MRI machine finally got me the results I needed to define my problem. PVNS causes bleeding, is not curable, is progressive and if one also has a genetic bleeding defect, then Heaven help you. When my knee swells, my whole leg is involved, it becomes one stiff, huge, severely painful limb that cannot be put down on the ground, much less stand on it. The doctors always say in the USA to rate pain from one to 10 with 10 being crying. Well, my pain is crying, hysterics, screams to bystanders to help me quick as the swelling all happens in literally less than 2 minutes. any of you who have had an active hemorrhage in a knee joint can agree. It is off the charts, cannot be measured.
I have enjoyed reading all these posts as I have felt so alone and distrustful of doctors who have shut doors on me when I ask questions that they cannot answer. At this point I have been told only that when I have these gigantic swellings, I can make an appointment on Monday or Wednesday or Friday to see a Physician's Assistant to try draining it and then a cortisone shot. In this country, they usually say you can only get 3 shots in the same joint, or the cortisone will be counterproductive. Well, I have had 2 already and feel I will never time my "event" to fit the schedule of the busy medical center in my valley. In short, they are done with me.
My kindly internist who knows me best has seen to it that I have prednisone and pain pills on hand to use when needed and my hematologist has given me Transexamic Acid pills to slow bleeding when needed. It seems that my bleeding disorder is also very rare and is characterized by my forming a clot, reluctantly, then the clot will disolve and it bleeds again. I carry these meds along in a sack with my heavy knee brace and medical literature should I be caught on the streets without my husband when it hits and I have to convince someone what my problem is because I will need their help immediately. This is like an albatross around my neck, a constant reminder of my disability. And I dare not look too far ahead into the future because I so much want to remain mobile and independent.
It has helped me to read these forums, but it also causes me to fear the future so much as I hear all of your pain line by line and inbetween the lines. Please continue writing as you are my only contact with the reality that I live with ....and you too. I am quite old, but i have people to see, places to go, things to do, and I am not finished with life. You can all help me with your comments.
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