How long do I have to be like this

Hi guys

I'm a bit wound up so thought I'd throw it open. I've still no proper diagnoses as of yet, I've got my next app with rheumy con next month.

Felt a bit fobbed off at last app 4 months ago eg your levels are low prob still steroids etc see you in 4 months and yes keep on the painkillers and naproxen if you think you need them ??

Since then I've been hosp twice with chronic gastritis, have developed a dilated kidney and it looks like I've got a problem related to inflammation in my left eye. So what happens if when they do my bloods and my levels are low again and he fobs me off. My GP not happy he didn't prescribe omprezol (sp) with the naproxen and has since changed my pain meds to try and help ..... I'm coping but I'm not sure I can do another 12 months of this :(

6 Replies

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  • Hi Kath. Sounds like you are in a very similar situation to the one I found myself in last July when rheumy consultant said "inconclusive - maybe steroids lingering on in your system - see you again in November". It was 10 months before I got a diagnosis and that was only because I was quite pushy and my GP was on my side and wrote to tell him he thought it was RA.

    Are the problems with the gastritis, kidney and eye related to the pain meds and not having a stomach protector or are you thinking they relate to the possible RA? My GP didn't give me omaprezole until I'd been on ibuprofen for a few months and this did seem to trigger my gallstones for a bit so I've now stopped taking all pain meds unless i really, really need them but I would always take the omaprezole with them now anyway. I'm on MTX 15mgs having been diagnosed in November - but I think they would probably be concerned about prescribing it for you if you have a problem with your liver or kidney.

    Meanwhile I advise that if you get any visibly swollen joints then be sure to take good photos of them to show the rheumy consultant next time and write down what hurts and when to show him. If you have an email address for him you could always send him or her the photos so they have more time to prepare and consider your case. Good luck I understand exactly how you feel. TTx

  • Poor thing, it sounds as if you've really had a run of bad luck. But it seems as if your GP is paying attention so maybe talk to him/her about other options if the next appointment with consultant doesn't provide a clear direction. I appreciate it's really frustrating, but on the other hand I wouldn't wish this disease on my worst enemy. So if there's a chance that you're one of the people who gets one attack of RA & then it never reappears it could be worth hanging on a bit to find this out? Especially as the drugs we have to take are no fun.

    But in the meantime do take good care of yourself - good diet, sleep and exercise can be amazingly helpful. And even if that doesn't stop your RA symptoms perhaps will help make sure nothing else rotten happens to you! You've done really well so far, so don't give up now. Good luck

  • Hi Kath, sorry to hear you are having such a hard time.

    When you next see your rheumy could you make a note of the questions you would like answered (keep a copy to hand yourself) ?

    I've done this for years and it has helped me.

    The main thing is that if you ask a question you get what you consider to be a good explanation.

    Take care

    Judi

  • Hey I'm sorry I've just read back my rant and it sounds very selfish. I had just got back from opthalmist who was worried after check up and stated my eye prob is related to inflamatory condition etc . It just seems like no one believes me and more bad things keep turning up :( no joy re kidney hosp said they would notify rheumy dude for him to rule out arthritis involvement first. It's like running backward through mud.

    Hope your all having good days :) xxx

  • Don't apologise Kath - I know it is such a frustrating time when you are waiting for a diagnosis and feel others aren't taking you seriously - this was the worst bit for me and I didn't have a swollen eye or a bad kidney to contend with. There are other forms of inflammatory arthritis though so maybe you have one of them and they need to make sure they are treating you for the right condition. I think kidney problems would normally be caused by the drugs we are on rather than RA but I may be wrong about that. Take care, keep calm and keep a record of all swelling etc. Hang in there and keep wading through the mud - it'll be fine in the end. TTx

  • I do sympathise - it seems to take forever to get a diagnosis! A few years ago, I already had a diagnosis of RA, but had been in remission for a while. I was found to have a low blood count when I went for an operation (unrelated). I was investigated by all sorts of specialists for almost a year - at least I know I haven't got lots of things after having every bit inside and out looked at! Then, after my hands and wrist flared up convincingly, they all decided that the reason my bone marrow was not working was the RA! High dose steroids again...and everyone lost interest as my bone marrow decided to work again.

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