getting nearer to my diagnosis!!

I phoned the hospital and asked to speak to the rheumy nurse, they don't appear to have one because I was put through to the secretary I had left two messages with last Friday, and she doesn't work fridays and hasn't dealt with her messages yet today.

Apparently my consultant is on holiday but she will print off my blood results and ask another consultant to review and write me a letter giving the diagnosis. She is not able to tell me the results, and there is no-one in today. She said the letter will be dictated tomorrow afternoon, so she probably won't be able to email it to me until Wednesday

I am not feeling great this week, I think the stress of this and family problems has exhausted me, I am achy and tired, lethargic, ..... feeling down, but will try and get the energy for the gym and a swim later, I really hope they tell me soon

9 Replies

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  • I do feel for you being left in limbo like this. The lack of resources for early diagnosis and treatment of RAin some areas is shocking. I know it's easy for me to say but try to not let this get on top of you. It's great that you've kept up your gym and swimming as I find I always feel better after exercise. It sounds like you'll hear very soon so good luck and I hope you get the treatment you need soon. All the best

    Paula x

  • Complain to pals at your hospital,they then might be able to speed things up. I'm sure there is more than one consultant at the hospital who can help you.

    sylvi.xx

  • Thank you both for your comments, I want to know but at the same time i'm frightened to be told, feeling a bit scared and overwhelmed, I wish I had a partner to share how I feel with, a re-assuring hug would do wonders at the moment, you guys are a godsend, i'm still trying to summon the energy for the gym, I know that will stop me feeling sorry for myself, just wish I felt more energetic, bye for now xx

  • Hi bidzi

    You sound like me , im waiting to see specialist on Thursday , to see if i am any nearer finding out what is actually going on with me . I have the same feelings as you and it very scarey and frustrating at the same time . i get down , i just wish i had answers , I too am on my own and it can be lonely , I have grown up children who are great , but sometimes i dont like to bother them with my problems .

    Anyway i hope you too get some answers and have a nice relax at the gym .

    Take care Julie x

  • Poor you Bidzi - it's so frustrating isn't it? These people have such power over us and then they just swan off on holiday leaving us in limbo or feeling rubbish or both. Did she not give you any indication during your consultation then? Mine told me I had RA then and there but it was the second consultation and he had already seen the blood results I suppose. I'm having trouble getting to see him again now. I think I will see him in a telemedicine consultation in a month but I've yet to have a letter or anything confirming this.

    I wrote a letter to our medical director of the health board telling him my story and asking him if he thought it acceptable that I should have to wait 8 months from diagnosis to follow up consultation with any rheumy person when I've been put on a drug as powerful as MTX - which doesn't seem to have been effective enough keep the RA at bay. Today, having heard nothing back for 2 and a half weeks I phoned his secretary and she said she's only part time - phoned me back 3 times - last time to say how sorry this man is for not acknowledging my letter or email (she blames herself of course!) but he is still waiting to hear back from my rheumy to complete his investigation of my case. Ha he'll be lucky - he's getting to see what it's like to be held in a very slow moving queue himself now! TTx

  • OOps meant "without seeing any rheumy person" - sorry!

  • You are all so kind, I have had a really bad day, lots of other stuff going on apart from the RA stuff, so I appreciate all your comments and trying to lift my spirits. I have been in the gym and forced myself to do 3 times what I usually do, but it has helped get the frustration out, i'm too worn out to go swimming though, but tomorrows another day and hopefully the sun will be shining.

    I hope when I get more experience and get to know you all a bit more, I will be able to encourage and help you in some small way too.

    Julie its nice to hear from someone at the same stage and in a similar position to me, hopefully we will both benefit from that

    I am going to have a relaxing evening watching tv with a glass of wine, i'm making the most of it before they say I can't have any anymore! Brigette xx

  • Hope today you're feeling a bit stronger. Have you booked an appt with your GP to talk through the results, and to talk about more temporary pain relief? Also, the GP could be hassling the consultant on your behalf - you're his/her patient so they should be caring for you! Pollyx

  • Hi Polly,

    I do feel better today thank you, i'm one day nearer to my results. I am achy and slow, but going for a walk later and i'm looking forward to that.

    I tried to get the GP to talk to me about my results but he told me he couldn't help and I had to go back to the hospital specialist for my results, I am hoping to hear from him on wednesday. In the meantime the pain is bearable, I am so used to it now I just accept that I am slow and achy, feel very old! I will wait and see what happens next. I have diclofenec I can take if I need to, but I try not to take anything because I don't like to take any pills really,

    Brigette x