how to get a clear diagnosis?

mandylerwill
mandylerwill Member Posts: 9
Hi - I would like to ask for some advice on getting a diagnosis that I can have confidence in.

Brief history

Mid 40s, female overweight - no significant problems until January this year.

One knee is painful and might be linked to repetitive movements associated with spot welding - assumption osteo-arthritis, also had an operation for tendonitis (results not brilliant) - unhappy, but unworried about this - lose weight, exercise, pain and inflammation pills - co-codamol and ibuprofen, tens machine, hot and cold packs etc.

Pain and swelling in both hands. fingers lose strength, fingers won't straighten fully, fingers are bending to the side.

RH Factor was 125 about 6 months ago (consultant state NOT Rheumatoid) and is 174 now against a normal of 20? Understand that you need a clever person to measure multiple things, not just RH Factor. Referred Rheumatology again - but wait 3 months. Have also had MATS referral and physio referral.

What is the concern?

Pain
Inflammation
Loss of function in hands
The thought of something going wrong now that could be fixed if we knew what it was.
Conscious of '100' different types of arthritis and consultant saying 'not Rheumatoid' does not say what is is.
GP is good but only refers to 'wear and tear' and seems at a loss what to do next.

Should we try to get a private diagnosis quickly?
Are we just not accepting a new and unwelcome reality?
What should we do?

Bristol

Comments

  • helpline_team
    helpline_team Posts: 2,288
    edited 30. Nov -1, 00:00
    Dear Mandylerwill,

    I'm sorry to hear about these concerns with your hands (and knees too). As you've mentioned kneeling and doing spot welding I wonder whether you work in heavy industry and whether this is affecting your hands?

    Here at Arthritis Care we are lay-people so cannot give you individual medical advice. But we are very much here for information and support - so I wonder whether you'd like to ring us for a chat about how things are?

    Your MATS (is that musculo skeletal?) referral - how long will that take? and I wonder is that for your hands? It might be an option to see how that goes and what's suggested. They might be able to refer to a hand specialist - so you might see how long that might take.

    If you'd like some information why not email us your details - we've got articles on hands (but some of them are hard copy rather than online).

    On the self managing arthritis side if you are working on losing weight it can be helpful for the GP to weigh you and give you a clear goal to aim for. But I wonder how this is all feeling? Do ring us for some support and here's a link things that we offer around self managing arthritis
    http://www.arthritiscare.org.uk/PublicationsandResources/Selfmanagement
    You might be interested in getting other Forum members' views about getting referrals also.

    I hope we can help further

    Kind regards

    Guy
  • mandylerwill
    mandylerwill Member Posts: 9
    edited 30. Nov -1, 00:00
    Guy,
    thanks for your kind words. Mandy is just coming back from work now. I am replying with her consent (I am her somewhat concerned husband, Graham).

    Mandy used to work in industry for a number of years, repeatedly pressing a foot pedal to make spot welds. That is some years behind her and she now works in a shop dealing with disable aids.

    The concern is really with the hands.

    I will ask how she feels about calling up.

    I guess the GP just does tests and basic stuff and basic painkillers with nothing about managing the disease. The RA consultant says 'not me guv' without saying what it is for definite.

    Mandy has had the MATS referral and is attending physio. The GP has reluctantly prescribed voltarol.

    No one has described what is likley to happen with her hands over time, no one has said whether it is possible to fix it.

    We have downloaded 2 documents from the site and will have a look at the link as well.

    The questions really are about what to expect from the disease (whichever one it is)and what to expect from medical authorities.

    Any advice or suggestions welcome

    Graham
  • stickywicket
    stickywicket Member Posts: 26,280
    edited 30. Nov -1, 00:00
    Hi there Mandy and Graham. I'm not a member of the Helpline team, just an ordinary forum member but I can feel your anxiety so I decided it wouldn't hurt to pass on my thoughts.

    The consultant doesn't, or at least didn't, seem to think you belonged in his gang. A rheumatologist deals with all kinds of auto-immune forms of arthritis, the sero-negative as well as the sero-positive. If he doesn't think you have an auto-immune form of arthritis then he'll hand you back to the GP. The GP deals with osteoarthritis. He does this in all the ways that yours appears to be doing. There's no cure for any form of arthritis though exercise and weight loss will keep supporting muscles strong and lessen the pain. X-rays could determine how advanced it is but won't change anything.

    You seem worried that, although the rheumatologist didn't think you had an auto-immune form of arthritis, given that your rheumatoid factor is now higher, it might still be RA. That's a possibility. But, having had RA for over 50 years, I can tell you that, when it's bad, there's not just the pain and inflammation but also overwhelming fatigue. Has anyone in your family got an auto-immune disease? (There can be a genetic predisposition.)

    You have another rheumatology appointment. I can't see that three months will make much difference either way but use the time well. When there is swelling take photos of it. Keep a Pain Diary. If possible take someone with you to the appointment as two sets of ears are better than one.

    'Wear and tear' is just a euphemism for OA. If it's that then you are doing the right things. There is little more to be done until / unless surgery becomes an option. If you have an auto-immune form of arthritis you need the right medication to slow the disease down. Only a rheumatologist can prescribe it.

    It might be that you are 'just not accepting 'it. Arthritis of any kind is hard to accept and the acceptance is an ongoing process. But you're concerned that you've been diagnosed with OA when you actually have RA – or somesuch. I, too, would want to be certain but, apart from disease modifying meds, not a lot will change.

    By the way, if the GP has prescribed voltarol, I presume he's stopped the ibuprophen. Has he also prescribed a stomach-protecting med as any anti-inflammatory medication can be tough on the stomach.
    "The deeper sorrow carves into your being the more joy you can contain." Kahlil Gibran
  • helpline_team
    helpline_team Posts: 2,288
    edited 30. Nov -1, 00:00
    Thank you Stickywicket.

    Graham and Mandy you are most welcome to get in touch in any way that you'd like (online or by phone).

    We'll be happy to listen and reflect and see what options may come up through talking things over.

    I hope this will be of help.

    best wishes

    Guy