My daught has just been diagnosed

pussycat51 Member Posts: 2
edited 12. Nov 2011, 02:54 in Young people's community
My daughter has just been diagnosed with having R A, shes just 25. It took 3 doctors to eventualy believe that she was unwell, it even says on her doctors notes that they thought she was a hypercondriac, the 3rd doctor believed her (after suffering for 10 months) and she has just had her first hospital visit and a prescription for sulfasalazine.
She has just been turned down for Disability Allowence because they basically say that she is not ill enough and does not need any help around the house and getting about, Iam not happy about this outcome because she does need help, the help she gets is from her 6 year old daughter, who has to help her dress and undress, open cans etc. My grandaughter tells her mum that she should be helping her, not her helping her mum. I live miles away, dont drive. This upsets me loads as you can imagine, I dont want my grandaughter to have to be my daughters carer.
Any Ideas here please.


  • stickywicket
    stickywicket Member Posts: 27,687
    edited 30. Nov -1, 00:00
    Hello pussycat51 and welcome to the forum. As a mother I can well understand your frustration and worries about your daughter although, as you will see from other posts on these forums, 10 months is not a long time for a diagnosis. Arthritis can be very difficult to spot. It will take time for all of you to adjust and it must be hard living so far away.

    I'm afraid I don't know much about DLA these days (It's undergone several name changes since I first got it) but there are plenty on the forum who do. Try posting this on the Living With Arthritis forum as more people look in there. Also, the 'Simple Ideas' thread, at the top of that forum, might help your daughter as there are lots of things on the market now for helping us open cans etc. (It was childproof pill containers that my sons had to open for me!)
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • Cez
    Cez Member Posts: 46
    edited 30. Nov -1, 00:00
    I was in the same situation, took 3 docs to diagnose over a period of months etc, I could barely walk by the time I was finally given blood tests and diagnosed, the last doc was brilliant. My sister did everything for me at this time and I gave up my house and moved into my parents because ivwas struggling so much.
    The up side is that once my meds kicked in, I was much improved and now i'm luckily at a point where I feel very well and don't need any help. My point is that now your daughter is diagnosed and seeing a rheum doc, they should be working towards improving her symptoms and making her comfortable and hopefully she may not need long term assistance. I understand it's frustrating waiting for this to happen but give the meds chance to work before worrying too much about your daughter coping long-term. My friends mum has intermittent flares of arthritis meaning che can't work and still isn't entitled to DLA so it's an uphill battle. If you're sure you want to persevere with this, perhaps citizens advice could help?

    Wish her luck from me