Newbie wanting to rant (sorry!)

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bex29
bex29 Member Posts: 3
edited 4. Jul 2014, 04:32 in Say Hello Archive
Hi All

I am 22 years old, I have had troubles with my knee since I was 11 years old, so almost 12 years ongoing problems. It is much larger than my other knee, constantly painful and for 10 years it made a horrific clicking noise, almost like Velcro tearing every time I bent down/stood up. After being referred too and from different specialists, I was discharged about 5 years ago saying it was most likely just growing pains or water on the knee (even though doctors tried to drain several times with no success). When I began to walk to work in 2012, I was in so much pain I went back to the doctors and demanded a referall to another specialist. They sent me to see an Orthopedic Surgeon who put me in for an arthroscopy straight away and 6 weeks later I got the results... nothing showing. So I was referred to a Rhumertologist who took one look at my symptoms and history (not even my knee!) and said it was Rhumertoid Arthritis, he drained it and injected it with steroids. Although still in pain, I had a beautiful thin knee for once!... 2 days later my knee had ballooned straight back up, and the Rhumertologists solution was "take painkillers, I'll see you in 4 months". So I asked for a second opinion at another hospital, and was told that it looked more like PVNS as it was only in 1 joint, so was sent BACK to the Orthopedics to conduct another arthoroscopy (because the NHS somehow lost my previous results!!) which I had done in May 2014. Last week, I went to get the results of this which stated definitely not PVNS, and it is not a surgical problem - so now the results prove that, the Rhumertologist is correct and I have RA. I was also told that there is not one type of treatment that suits all - and some of the methods can be 'quite harsh', and it's 'process of elimination' to find a treatment that my body relates to. I have also been told that I have potentially arthritis in my ankle as it is larger than the other (way to make me feel paranoid, never had any trouble with it before!) But I am prone to swollen eyes and I've read this can be a complication with RA?
Sorry for the rant - just am completely fed up of it all. Does anyone have any similar experiences with mis-diagnosis at all!?

bex29:- please note I have amended colour from red to black. Black is the standard colour, as some posters have difficulties reading other colours. Moderator JK

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  • stickywicket
    stickywicket Member Posts: 27,730
    edited 30. Nov -1, 00:00
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    Hello bex29. You do sound fed up and no wonder. As you have discovered for yourself diagnosis can be a long drawn out process. It's like that for many on here. It's often a matter of eliminating other things but you've certainly had a rough ride.

    I'm afraid steroid jabs don't work for everyone. It's a matter of trial and error. As for the meds – yes, they do seem scary on paper but I've been taking methotrexate and hydroxychloroquine for about 14 years now with no ill-effects.

    I'm not sure about swollen eyes. Dry eyes can be a complication of RA but I don't think I've heard of swollen ones.

    I hope you can finally get on some meds that will help you. If you've any questions just start a thread on the Living With Arthritis forum. I hope to see yo around.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    Oh this sounds familiar; my first tentative diagnosis was PVNS (pigmented vila-nodular synovitis) but mine turned out to be psoriatic arthritis (PsA) - but that wasn't diagnosed until nine years later. I won't relate the trials and tribulations I went through because I don't want to recall them but I lost a year being bounced between orthopaedics and rheumatology, it wasn't fun. Any form of arthritis is degenerative and progressive but we each vary in how (and how rapidly) we are affected. The meds are designed to slow the process of the disease and reduce the potential for joint damage - many of us are on the classics without any trouble at all so don't take the side-effects warnings as guarantees that they will pitch up.

    My breakfast is ready, I have to go. I'll come back later. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • barbara12
    barbara12 Member Posts: 21,281
    edited 30. Nov -1, 00:00
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    Hello Bex and welcome to the forum
    There are so many people on here that have had trouble getting a diagnosis, at the min I have OA but waiting for more results after 5 years, I do feel for you being do young, but yet you now have time to try the meds that are out there before any more damaged is done, sorry I cant advice has I have no knowledge of these meds, but we are always here for you to talk to or have a moan..I do wish you well...
    Love
    Barbara
  • bex29
    bex29 Member Posts: 3
    edited 30. Nov -1, 00:00
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    Thank you for your replies... Its always nice to know there are people to talk to who understand!!
    A friend of mine has RA and they diagnosed her fairly quickly and after several years of treatment she is feeling much better and able to get back to her hobbies like horse riding. I went to see a specialist about a problem I have with my jaw and she had a look at my knee and said that she would like to be able to do acupuncture on it as this should be able to help... Have any of you ever had this and has it helped at all? I have a huge fear of needles but I know they are so think that they don't hurt!!
    X
  • stickywicket
    stickywicket Member Posts: 27,730
    edited 30. Nov -1, 00:00
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    I've had acupuncture in the past and felt it did help very temporarily. I've no fear of needles (Just as well as I've had regular blood tests for about 40 years :roll: ) but the acupuncture ones are very thin and don't go far in. If you have the opportunity why not give it a try as you might otherwise wish you had later? Any port in a storm. I hope it helps.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright