Gobutslow Member Posts: 23
edited 11. May 2017, 04:11 in Say Hello Archive
I am at the start of my journey but it's taken 30+ years to get here.
I have a family history of AS (mother/brother). I am HLAB27 + as is my son.

I have had pain in my SI joints/low back/neck pain for 30+ years.
I had x-rays years ago and they said slipped disk. I had physio and told to put up with it.

Roll on to 18 months ago and I have been having problems with my asthma.
So I've been going to my GP a lot.
On one occasion I mentioned having sore,burning and stinging hands,fingers,knee,feet and toes. My GP decided to send me to a Rhummy.

Sorry, I hope you are still with me ........ so I saw the Rhummy a few weeks ago and he asked me about my family history and my history.
He tested the HLAB27 (I knew I was positive as my son was tested as a child)
Well it came back positive!!! He also sent me for a MRI. I had 15 x-rays.Bloods. One test came back I am anemic.
I am seeing him the end of June for the results.

I just can't believe after 30+ years of this pain,stiffness etc.. I might get an answer.

I hope I haven't gone on too much but it's great to get it out. :wink:


  • [Deleted User]
    [Deleted User] Posts: 3,636
    edited 30. Nov -1, 00:00
    Welcome gobutslow,

    What a journey you've had! After such a raft of bloods, x-rays and scans your file will be bulging at the seams. Definitely take someone with you when you get the results. You might want to ask the consultant to copy you in to the GP report he'll be sending, it's quite common, some consultants do it routinely now.

    You might want to chat over things once you have your results - if so give our helpline a call, 0808 800 4050

    Also take a look at the Arthritis Care website, there are lots of interesting areas dealing with diagnosis, types of arthritis. Medication and other treatments, living with arthritis and lots more, find it on https://arthritiscare.org.uk

    Take care
    Yvonne x
  • Gobutslow
    Gobutslow Member Posts: 23
    edited 30. Nov -1, 00:00
    Thanks for the reply. :D

    I was surprised how many questions I was asked and how much the rhummy was writing down.
    I will remember to ask to be copied in to letters etc..
    I am used to gathering hospital notes as I'm a carer for my long time partner.
    He has more than one file!! :roll: :lol:

    I have been taking information on this forum in. I have started a symptom diary as I feel telling the rhummý all my aches and pains makes me look like a hypochondriac! :lol:
  • stickywicket
    stickywicket Member Posts: 27,213
    edited 30. Nov -1, 00:00
    You are certainly not 'going on too much'. Let's face it, you have 30 years worth of anxiety and frustration to pack in so your short post was definitely not too much.

    I hope you can get some answers and some treatment to help. Please keep 'talking' to us and do feel free to join in anywhere. This is a very friendly place and newbies are always welcome.
  • Gobutslow
    Gobutslow Member Posts: 23
    edited 30. Nov -1, 00:00
    Thank you for the welcome. :D
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Hello, it's nice to meet you but I am sorry you have had to find us. I found your first post quite succinct, it's odd how things can rumble on for years and years without us doing anything about it because I we become accustomed to how stuff feels.

    I was born with eczema then developed severe asthma aged seven (this was back in 1966). I began my arthritis in 1997 but it took some time for it to be recognised as such: I was finally accurately diagnosed in 2006 with psoriatic arthritis then, in 2011, osteo joined the party. AS is on the auto-immune spectrum of inflammatory conditions so I hope you soon get some answers and can begin some treatment. Please let us know how you get on. DD
  • Gobutslow
    Gobutslow Member Posts: 23
    edited 30. Nov -1, 00:00
    Hi to you to dreamdaisy. :-D

    Like you I have had Asthma and Eczema all my life. It's only in the last few years that it's been uncontrollable.
    The GP has tried numerous inhalers but nothing was working so I have ended up on montelukast tablets as well as symbicot/ventolin. Which has made things better.
    My skin has been bad and the itching burning feeling makes it worse. :cry:

    I think as the Asthma was worse it triggered everything off and I started having pain in my feet/toes/heels/hands and wrists. The pain in my knee and si joints were more pronounced.

    I'm sorry that you have been through so much yourself. I wish you well.

    I will let you know what happens. I expect I will have a load of questions. :lol:
  • Gobutslow
    Gobutslow Member Posts: 23
    edited 30. Nov -1, 00:00
    Also, with the AS, because my Mother and Brother suffer terribly with it. I suppose I have just carried on thinking it's not as bad as their problems,why make a fuss.
    I have learnt to cope when my si joints/knee have been playing up. Light exercise,heat mat ( cold makes the pain worse),deep heat and ibuprofen.
    I watch what I eat and ease up on the starch.

    It's a PITA quite literally. :lol:
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Thank you for your kind words but life is as it is and as it was. I was born in 1959 and no-one knew anything about genes etc. apart from the fact that things 'ran in families'. Now we know why. :wink:

    My asthma and eczema have gone the other way to yours: the former was uncontrollable in childhood due to no medication (apart from cough linctus and suppositories :? ) but the eczema did respond to a strict diet (and boy was it strict!) It was my Ma who noted what made things worse or better and so devised my diet - back in the very early 60s nobody knew much about such matters so Ma relied on her instincts and observations. Asthmatically my quality of life improved dramatically with the arrival of the first inhalers and now the meds subdue my immune system so things are much easier to manage. I am now able to eat fruit and realise that, compared to chocolate, it is very unreliable when it comes to texture and flavour. :wink: I unwrap a Mars bar and know exactly what I will taste: fruit is a lottery.

    Re your Ma and brother, it is very sad that they have to struggle but that does not demean or diminish the struggles you have faced and are facing. To further help your rheumatologist towards a diagnosis it may be worthwhile keeping a short diary of pain and tiredness levels, what helps or hinders and how you are adjusting your daily activities to cope. DD