rheumatologist

tilly1
tilly1 Member Posts: 3
edited 30. Jun 2010, 13:01 in Living with Arthritis archive
Hi
I am not having much success in getting a diagnosis as to the type of arthritis I have - i also have psoriasis - Brufen seems to be the only thing on offer. I have seen two Nhs consultants who gave differing opinions, well one was not really even interested and have now decided to try and get a private diagnosis, but don't know how to find good rheumatologist.I live in Wales but would be able to travel. If anyone has any suggestions I would be so grateful.
Very best wishes to all who read this
many thanks
Tilly

Comments

  • speedalong
    speedalong Member Posts: 3,272
    edited 30. Nov -1, 00:00
    Hi Tilly1,

    welcome to the forum, I'm sorry I can't help ... (I have OA,) but I am sure Dreamdaisy and Dorcas will be along with some suggestions when they can ... and other PA peeps.

    Speedy
  • mummyb
    mummyb Member Posts: 1,231
    edited 30. Nov -1, 00:00
    Hi Tilly, welcome to the forum, just wanted to say I know how you feel. I don't have psoriasis but they cant decide with me either. Xrays showing osteo, rheumatoid factor indicating RA, latest xrays showing gout in hands. Waiting for doc to decide on a plan of action, hopefully he will have done this by the time I go to see him on Thursday. So good luck and I hope they get your diagnosis sorted soon. Best wishes, Brenda xx
  • barbara12
    barbara12 Member Posts: 21,276
    edited 30. Nov -1, 00:00
    Hi Tilly
    And I am another one that cant get a decision has to what going on, I have my first rheuny appointment in july , hopefully I will get some answers.
    Good luck I do hope you can find a rheumy and get some answers very soon.
    Love
    Barbara xx
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Hi tilly, and welcome. I've spotted your question (obviously!) but I am very tired and did my anti TNF stuff tonight, so not on top form. I will post a better response tomorrow, I promise. Dreamdaisy (who also as PA).
  • woodbon
    woodbon Member Posts: 4,969
    edited 30. Nov -1, 00:00
    Hi, Welcome to the forum, you and I am in the same boat, I've seen all sorts of specialists and had scans, x-rays MRI, blood tests, but they still are not 100% sure. It seems just as if one person comes up with an answer, someone else thinks its something else. :?

    I think that the nature of arthritis can be confusing, even to the specialists and hard to diagnose for certain, unless you are a classic case with all the right symptoms. I'm sorry, I don't want to depress you but most of us have been where you are and I hope that you soon get a proper diagnosis and then the right treatment to help you to feel a lot better. :wink:

    Love Sue
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    OK tilly1, I am metaphorically rolling up my shirt sleeves to try and provide a helpful answer.

    My arthritis problem dates back to April 1997 when my left knee started to swell. A few medics told me a number of times that nothing could be done, it would go away of its own accord. They were liars. By 2002 it was 27" in circumference, hot and painful and I was having severe difficulty in walking. Also in 1997 I had a very sore scalp. People checked it, said it was some type of dermatitis and it would go away. It did.

    I had surgery on my knee in Feb 2002, to cut out all the swelling (most of which had solidified). This op was called an open synovectomy. It didn't work particularly well, all the swelling came back, so in June 2003 they did it again. In Oct 2003 my right knee joined in the fun. In Nov 2005 I had a closed synovectomy on my right knee, to clear that one out. By now I was four years in at rheumatology, they had decided it was some form of an inflammatory arthritis that was causing the problem but they didn't know what. They decided to call it RA. I was on lots of nasty meds which were doing little to help: arhtritis meds are not cures, just treatments. They alleviate symptoms and try to slow the deterioration, that's all.

    Finally, in Oct 2006, all became clear. A drug called enbrel had a good go at giving me liver failure and I had a bout of psoriasis. It affected my scalp again (slightly), the inside of my left ankle, my soles and my palms. Everyone cheered - hurrah! At last I knew, PA but back to front. It had been PA all along, but because I didn't have the P part, it was difficult to spot. I have never been a co-operative patient: I like to give the medicos summat to think about.

    It turns out the P is from my father's side of the family. An elderly uncle in America is severly afflicted, (my Pa's little bro) but it didn't show until he was in his eighties. My mother's side gave me asthma and eczema. I am a genetic disaster.

    It can take a long time to diagnose PA if you don't have the classic symptoms: that's my point! Apparently it usually starts in the smaller joints, toes and fingers, and nails thicken and become pitted. I also read, however, that it can start in a major joint and then affect the mirror joint: that is what I did, and that's how it's carried on. From what you have said I think you are in my boat. I think you're a PA gal too. Welcome to one of the worst clubs in the world - I am so sorry you have joined. Dreamdaisy
  • skezier
    skezier Member Posts: 11,333
    edited 30. Nov -1, 00:00
    Hi Tilly,

    Welcome to the forum from me as well. Its a good place. I think your best bet might be to ask your gp for really good one who does private work and see what they say? I don’t know how else you can do it I am afraid. I hope you can get some help and some answers. I have pa, more the a than the p so know it can be frustrating. Nice to meet you Cris x
  • frogmorton
    frogmorton Member Posts: 28,050
    edited 30. Nov -1, 00:00
    Hi Tilly

    I just googled private consultants (was looking for neurologists in my area for my daughter) a whole load came up, but I had been given a 'name' of a good one so it was easier for me.

    LOve

    Toni xx
  • tilly1
    tilly1 Member Posts: 3
    edited 30. Nov -1, 00:00
    Hello everyone
    Thankyou for all of your replies and best wishes etc.I have just got online and read them all and I must admit that I'm sitting here in tears, its very comforting to know that there are other people out there who understand, not that I am glad that any of you are suffering, just that you all understand and are there.
    Thankyou all
    My love to everyone
    tilly
  • loopylou
    loopylou Member Posts: 175
    edited 30. Nov -1, 00:00
    Hi Tilly
    Welcome to the forums, I am so sorry to hear your joining the good ole PA club.
    I too have Psoriasis I've had that since I was 18. I was diagnosed in Oct last year with PA after years of suffering with random joints deciding to swell up and become painful. I'd been to the doctors many times before but was told it was just a virus and to take Nurofen, I'd also gone through many blood tests and X-Rays. It was me moving house that finally got me the diagnosis I needed. I switched doctors and they referred me to the hospital (again only after blood tests and X-Rays). It was a relief knowing what was wrong with me.
    Search for rheumatologists in wales online I'm sure they'll be lots near you.
    I hope you get yourself sorted soon and again welcome :)
    lou
    -x-
  • tillytop
    tillytop Member Posts: 3,460
    edited 30. Nov -1, 00:00
    Hi Tilly (from the other Tilly) and welcome from me too.
    So sorry you are having trouble with a diagnosis - it is horrible to be so unwell and not really understand why. You are in really good company here though - and, as you have already found, everyone is really supportive.
    I can’t advise you about how to find a good private consultant Tilly, but because your GP will need to refer you anyway, he/she might be a good starting point.
    But just wanted to pass on some tips, based on my own experience. If you are paying for your own appointment (ie you are not part of a private insurance plan), be really careful that you know the costs up front. I saw a private consultant at first and he arranged blood tests and xrays immediately after my appointment with him. I asked how much they would cost but nobody could tell me and, because I was desperate I went ahead with the tests anyway and the size of the bill when it arrived gave my husband and I a great deal of stress and worry.
    Please be aware too, that the NHS is not always happy about people "dipping in and out" of
    NHS care. More than once I have been charged for blood tests done at the GP and hospital - because they were requested by the consultant I was seeing privately - and it can get frighteningly expensive, very quickly.
    Not trying to be negative – just want to save anyone else falling into the same pitfalls. I have now been able to find a good balance – I am seen and treated in the NHS clinic, and I just pay for a follow up appointment with the rheumatologist as needed. The rheumatology clinic is also very good in that, when I am due an NHS consultant follow up, they try to get me an appointment with the same consultant I see privately. So, if you can find a consultant who also does NHS work, you may be able to organise something similar.
    Really good luck Tilly – and please keep posting. We are here to listen and support you as much as we can.
    Love Tilly x
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Arthritis can be a lonely experience tilly1. It can cut you off from friends and family because of the fluctuations in how you feel and how you can cope. I thought I was doing OK, battling away on my own. Then I found here and suddenly it all became so much easier. I'm not the only one with this (unlike the friends and family), there are others who are worse off and better off and about the same, but they know how I feel, and I know how they feel. The feedback here is tremendous. Stick with us girl, we'll see you through. DD
  • dopeykit
    dopeykit Member Posts: 107
    edited 30. Nov -1, 00:00
    Hi Tilly,

    PA can be a nightmare to diagnose. Mine took 7 years by which time I was convinced it was all in my head and I was going mad. I had only a tiny patch of psoriasis, negative blood tests (not even raised inflammation levels) and no visible swelling. I saw a rheummy who suggested an ultrasound scan of my joints and that showed all the inflammation - then I got started on MTX and things are a bit better now. Best of all I know what I'm dealinb with.

    I was seen at Guys hospital but I'm sure there must be other good doctors.

    Hope you get the help you need soon - thinking of you

    Kit

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