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Knee pain and inflammation

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mysteryknee
mysteryknee

I've had a problem with my right knee for around 11 years now, I am only 22 years old so the trouble started when I was 11, when I fell and injured it. It is extremely swollen and painful. The doctors have tried draining the fluid several times and had no luck. I have had multiple MRI scans and they can't see any problems. Have been referred between the Orthopedics and Rhuemertologists. The first Rhuemertologist said it was Rheumatoid Arthritis, the second said nope definitely not arthritis. They have now passed me back to Orthopedic again!! It just seems like they're passing me to each other because they don't know what the problem is. I have had one arthroscopy a year ago, and have just been put on the waiting list for another. Doctors have said that the fall when I was younger isn't related . They mentioned something called PVNS which doesn't seem to be very common so there isn't much information anywhere to learn about it - the second Orthopedic i saw has ruled out PVNS. If anyone has any ideas, or is in a similar situation would appreciate any help or information!?

0 likes, 8 replies

8 Replies

  • Urs13
    Urs13

    Posted

    Hi, why are they ruling out PVNS? My husband also went undiagnosed for a very long time with the same symptoms as you. He saw Orthopedic surgeons and RA doctors but no answers. We have consulted with two Orthopedic Oncologists (Musculoskeletal Tumor Surgeons) and they can see the PVNS when the other doctors couldn't. It is very easy to miss unless they know what they are looking for. There are two good forums you can look into to read about similar experiences. One is on this website called PVNS Experience and Causes and there is a rather large Facebook page called PVNS is pants. I live in Los Angeles, but many people on these forums are from the UK and have talked about Professor Timothy Briggs and Rob Pollack, both at the Royal National Orthopedic Hospital in Stanmore. Hopefully, that will get you pointed in the right direction. They do not know what causes PVNS, but it is a very stubborn joint tumor disease. My husband split his knee open as a child and you will read similar stories about prior trauma to that particular joint, but not everyone has had prior trauma that has PVNS. Good luck and don't give up! I hope you get a diagnosis soon!
  • mysteryknee
    mysteryknee

    Posted

    They're ruling PVNS out because although the MRI scans showed signs , the surgeon took a tissue sample and said it came back normal. Hoping the second arthroscopy might show something! Thank you for the websites I'll definitely have a look at them smile
  • Urs13
    Urs13

    Posted

    Well that is good news if it's not PVNS as it really is a horrible and difficult disease. And you are so young. I hope you find out something soon.
  • ernie0256
    ernie0256

    Posted

    I have had PVNS for about 8 years now and its not a good thing. Its not uncommen for one doctor to say you have it then another say you don't. I had my first two ortho surgeries by one doctor then he referred me to Stanford. At Stanford the doctors first said I don't have PVNS and then after doing a ortho they also said I do have it. I have had five surgeries to my right knee so far. The last one was this past December, now the doctors are saying I will need a total knee replacement. I also have the PVNS in my left knee and possibly in my right ankle. I really hope that you don't have PVNS as its not as easy to cure as the doctors say it is. And its very pain at times.

    Good Luck and hope all turns out well for you

  • Urs13
    Urs13

    Posted

    And wishing you well Ernie0256. What a horrible battle you are having! I have quickly learned about the nature of this disease and what PVNS patients go through.
  • mysteryknee
    mysteryknee

    Posted

    Ernie0256 it sounds like you've had a horrible time, I hope it gets sorted soon and hopefully you don't also have PVNS in your right ankle. Thank you both for your answers it is really interesting to hear other peoples stories about it
  • Urs13
    Urs13

    Posted

    Mysteryknee, I am so glad you went to the PVNS is pants site! You will get a lot of support and it looks like you already have smile I have learned so much from other peoples stories to try to help my husband and hope to become an advocate in spreading awareness. Whether you have PVNS or not, hopefully your knee won't be a mystery much longer.
  • mysteryknee
    mysteryknee

    Posted

    Thank you for telling me about it! Is really interesting and helpful to read other peoples stories and everyone has been so supportive and they know much more than I do!
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