Think I have got lucky or unlucky

As u know I saw a rheumatologist on Friday who made me feel about 2 inches tall .i had reduced my steroids from 30mg to25mg last Saturday and was getting odd niggle but nothing to bad. My dr phoned me Friday afternoon and I told her what a rude horrible man she had sent me to see .she said he is very good and could I reduce my steroids to20mg . Today Saturday ifelt quite shaky when I woke up so I made some toast took my steroids and codeine .still didn't feel quite right .about 1100 I went to cafe over road and had some nice food as I felt I was lacking energy .when I got back I spent the rest of the day laying on the bed with a hot water bottle. At about 5.30 I got up had a walk about and felt quite ill .my wife dialled 111 and spoke to a dr told him reduced steroids etc. he made us an app to see him at Epsom hospital out of hours surgery for 7.40 .when we arrived I was struggling and in quite a bit of pain so the nurse there said she would go to A&E and tell them she was bringing me there. The triage nurse was very good got me some strong painkillers and got me through really quickly. When the dr saw me I explained my situation to him and he agreed that my hands looked very swollen and sore. I was also very shaky. He asked me why I was wearing sunglasses , I said it was because my eyes were light sensitive . He asked if he could look at them I said sure .he took me to a room where they look at your eyes properly don't know what they call the machine. He held my eyes open while he looked into them ,spent about 5 minutes on each eye ,he then told me that he was an eye dr (said optical something) then told me I have anterier uveitis (bilateral) in my eyes .he said this shows you are having a flare of an autoimmune disease .he said I must put my steroid dosage back up .my eye condition was an automatic referral to a rheumatologist and I must demand this of my gp on Monday and also I must get steroid eye drops for my eyes as they are being damaged he said to tell my gp his findings on Monday and his report will be with her by the end of the week .sorry about the long post but after being fobbed off for 21/2 years which have been hell I think I might have made a breakthrough thanks for reading Alan

20 Replies

  • Hi Alan

    Interesting story you've just told. I hope you can get a referral to a different Rheumatologist. Sorry that the one you saw made you feel so bad. It makes me cross when we are ill and we have to also cope with nasty doctors. I've had a few in my 28 year search for recognition!. Similarly to you I may have made a breakthrough by having a flare this weekend and I only saw my Rheumy on Tuesday.!.Keep fighting and I hope you get good treatment for your eyes.Good luck.

  • Thanks misty strange name have your eyes been affected as well

  • Hi Alan

    Luckily my eyes are not affected like yours, Misty is named after a cat I know. Good luck for your GP appt today. I've got to talk to mine about my sudden flare and reducing steroids from 20 mg now. I'd seen my Consultant on Tuesday last week feeling well. What a difference a few days can make!. Take Care.

  • Thanks misty hope you have a good day

  • some of the doctors have huge egos,..especially specialists it seems these days.

    I cant take steroids they don't agree with me...and codeine makes me vomit. But things work for others...

    So your saying that they kept mis diagnosing you, but guy saw the condition in your eyes...I can believe that.

    Sounds like you been through a lot, so hoping they get it sorted out for you...

  • Oh yes they sure do and they start of quite nice most of them.

    Heres an old joke

    What's the difference between God and a consultant?

    - God knows he's not a consultant.

  • come to think of it, it was a ENT doctor that sent me for my first CRP test and was concerned, cause it was high. The results seemed to go missing, or not passed on... He had a big ego too, as I remember. You really have to ask a ton of questions these days, cause often they don't even have your results passed on. Ive noticed that a lot...

  • Hi Alan, this was the beginning of my diagnosis 10 years ago. I still had to be assertive with my GP but like you, the opthalmologist told me my Iritis was due to auto immune so I asked for a second opinion, which luckily I got and 6 months later was diagnosed. Good luck on your journey x

  • I totally hear you. I have been diagnosed with SLE for 18yrs. For the last 2yrs I have been coughing and short of breath. Every time I went to my doc he treated me for chest infection. Then silent reflux. Told my doc in rheumatology and she never questioned it although I told her I wasn't happy. To cut a very long story

  • Well, I really hope you get diagnosed with, whatever, soon Alan. Terrible that we have to go through all this. I used to say to Drs, "I do have a life. Got better things to do than sit up here in your surgery". It brings the worst out in you, and for me, I am still on my guard now, in a consultation. Find out if you can, which rhuemy they are sending you to. Don't want the same one as last time !!!! And I bet your lady GP, will have gone down in your estimation too. For their sakes, your eyes had better be ok? Keep me posted Alan.

  • Thanks 6161 I am asking to be refered to UCH London not sure about damage to eyes yet find out tomorrow take care and have a nice holiday

  • How shocking that you had to end up in A&E in order to get a proper diagnosis, it must make you furious, it makes me furious. Good luck with it all - there will probably be loads of tests and appointments but at least you're getting the care you need now.

  • Thanks purpletop can only hope this leads to something now

  • Hi Alan ,have nothing futher to add than what everyone else has said as like you I am new to all this but take care and keep fighting don't take any more messing about , we paid for these so called experts training at the end of the day ,and we only get one life ,

    They get paid a huge amount of money and they get it wrong ,we all came in this world the same way but unfortunately some of us suffer while we are here more than others .

    They need to look at the individule and listen more and not just there blasted blood test ,sorry if I am ranting but just switched I pad on and reading what you have been though again has made me cross . Christina

  • Thanks Christina if this turns out to be some autoimmune the so called rheumatologist I saw on Friday is going to cop big time I will contact everybody to do with health care ,my mp, even the health secretary no way is he going to get away with it

  • Thanks so much for sharing, Alan - I love hearing stories like this (although I hate the situation that puts you there in the first place) because it restores my faith ( all right, maybe just a little!) in the medical profession. Thank heavens for medics like the eye-man who's finally got you on track to proper treatment. I really hope your appointment goes well on Monday; all swollen fingers are crossed for you!

  • Thank u carcrashgal I am hoping that something positive comes out of this really appreciate your kind words Alan

  • My eyes are always painful and sore my optician said they where ok I take it they would know if something was wrong or would you have to see an eye specialist.

  • Hi my optician told me the same thing , however he was selling me contact lenses every month I got diagnosed with sjorgens in jan and to be on the safe side took me off hydrocholquinne I am know waiting to see eye specialt ,I have completely dry eye , ask for shimmer test to be done by rummy or GP,they put a bit of bloating paper in your eyes for a couple of minuites it doesn't hurt just a bit uncomfortable ,don't leave it we all need are sight .

  • All the posts above do not surprise me in the least I have been suffering for several years I'm told Lupus does not always show up in the blood and I think this has happened with me he put all my symptoms down to taking steroids, does anyone know of a good specialist in the Telford area

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