Urgent Advice Please...

rayray
rayray Member Posts: 115
edited 31. Oct 2015, 03:28 in Living with Arthritis archive
Hi All,

Please could I have some advice.

I won't repeat my story but I have nasty pain in several joints and mild pain in several others. After a recommendation from my spinal consultant I saw a rheumatologist last month. It had been a battle with my GP to see her and when I saw her it was like talking to a brick wall.

One question she did ask was do I have psoriasis and I said no. At the time I wasn't having a joint flare and I felt better than I had for months! Things have once again flared badly and I think maybe I do have psoriasis. I have patches of scaly skin on my legs which have been hanging around for weeks. I thought they were nothing but they are now more persistant.

Tomorrow I see my spinal surgeon for a decision on neck surgery. I have made an appointment to see the GP at the end of next week - the earliest I could get to look at my skin. Have taken pics in case the skin heals between now and then.

I really don't want to see the same Rheumatologist again as she is, quite frankly, very rude and dismissive. On top of this I don't think my GP will refer me as I have seen the Rhemi twice now who says my joint problems aren't auto immune.

I will talk to the spinal surgeon tomorrow but of course she wants to talk about surgery not about a potential auto immune issue - I think she will hit a brick wall too as it was only through her persistence that I saw the Rheumi anyway.

What do I do? I am in so much pain Slightly painful hands but my neck, shoulder and back are awful. My feet have been getting worse but the rheumi didn'lt even examine them or my painful wrists and thumbs. Have been paying to see a physio and she cannot believe how stiff my back is.

I feel that I am unable to get treatment because noone will listen. Any ideas as to what I should do?

One thing I can't do is change GP. Have tried but I live in a rural area and we won't be accepted by other practices as we are too far away.

At the moment I feel totally stuck with life very limited for months on end. Have just had nearly two months of feeling better and it has been wonderful.

Apologies for the long post.

Comments

  • mig
    mig Member Posts: 7,151
    edited 30. Nov -1, 00:00
    Apologies not needed,I'm sorry I can't give any help other than i will be thinking of you and will be with you if needed. Mig
  • Boomer13
    Boomer13 Member Posts: 1,931
    edited 30. Nov -1, 00:00
    Hi; sorry you are feeling awful after a break from the pain, those are always most welcome.

    I have PsA and my skin psoriasis did not show up initially so like you, none of my doctors could figure it out. My GP finally biopsied a scaly, rashy bit of skin and found psoriatic dermatitis. There are different types of psoriasis and they don't all look like the most common variety. I think you should go back to your GP and show her the scaly patches on your legs. That seems to be a very big clue. Without my skin finally showing up, I likely would still be without diagnosis too.

    I hope you have luck getting your doc to take it seriously.
  • rayray
    rayray Member Posts: 115
    edited 30. Nov -1, 00:00
    Thank you so much for taking the time to reply. I will persevere and hope that either my GP or the spinal consultant can get me to a different rheumi.

    Thanks for listening - again.
  • dreamdaisy
    dreamdaisy Member Posts: 31,552
    edited 30. Nov -1, 00:00
    When my troubles began in 1997 I had what I now know to be psoriasis on my scalp but that cleared up after a fortnight in Italy. My first, admittedly tentative diagnosis, was unspecified auto-immune inflammatory arthritis and that wasn't changed until 2006 when I had a bout of psoriasis on my palms and soles. I rarely have psoriasis but I have some at the moment thanks to a flare. PsA is supposed to begin in the smaller joints of the body such as the fingers and toes but mine began in my left knee.

    Auto-immune arthritis is a complicated beast, and sometimes the professionals we meet in the course of attending clinics could do better but I have learned not to be afraid to speak up. We wait weeks for appointments and it's important that we get the most of them whilst we're in the room. It's always useful to take some notes in too because it's very easy to forget what we want to say as soon as we sit down! I hope you find some answers soon. DD
  • theresak
    theresak Member Posts: 1,998
    edited 30. Nov -1, 00:00
    No need to apologise. I'm sorry I can't be of any help, but just wanted to wish you well.
  • rayray
    rayray Member Posts: 115
    edited 30. Nov -1, 00:00
    Thank you so much for your help and support.

    I saw my spinal surgeon on Tuesday and explained how things are. She asked to see the patches on my skin and she said she thought they are psoriasis. She has written to my GP saying I need a second opinion. She suggested I photographed the patches and I laughed and said I already had.

    I am crossing my fingers that this will complete the jigsaw and I can get treatment. She is still happy to operate but we both agreed that neck surgery is a major thing to go through especially if most of the pain is inflammatory and could be treated with drugs. She has ordered another MRI to see if my neck arthritis has changed.

    Amazingly a few hours later I had a call booking me in for the MRI! This surgeon is so efficient! I was with her for about 10 minutes and she was able to have a detailed and adult discussion with me in that time. The rheumi I saw actually blanked me when I said 'good afternoon` and didn't answer my first couple of questions so I gave up. She was so rude.

    Anyway I have someone on my side who has really listened so hopefully progress will be made. Now I'm off to try and thaw out my seized up back - the joys of arthritis huh!
  • emmaadams
    emmaadams Member Posts: 140
    edited 30. Nov -1, 00:00
    glad to hear that your appointment went well and you FINALLY have someone on your Side :) hope all goes well in the next few weeks and that you get the results you are waiting for

    i also hope that your back pain is not to intense and you pain meds help dull the pain xxx
  • rayray
    rayray Member Posts: 115
    edited 30. Nov -1, 00:00
    Thanks for your supporting words. Trying to keep pain at bay with codeine and have booked a physio appt next week.

    Thanks again. 8)

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