1st rheumatologist apt

Following my rheumatologist apt today where I spent 4 hours talking with 2 rheumatologists, having xrays and blood tests, mri scans to follow - the big boss thinks it's rheumatoid arthritis especially as there's restricted movement (30%) inflammation in my right knuckles and xrays show very limited space. Wants to see me again very quickly to get started on treatment. Not to worry he says. Well I'm sat here in xray dept still, crying. He was very thorough and very good at his job and I'm grateful. I'm just upset and shocked I think.

17 Replies

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  • sounds like you are being thoroughly looked after 2 rheumies!!!! sometimes its difficult to see one. I know it seems like a life changing diagnosis but the medications and other support you can get can make sure that the impact on your life is minimal, if you are one of the unlucky ones and suffer severely either with pain , defomity or just sheer exhaustion you will meet some brilliantly helpful people like specialist nurses, sympathetic gps, pain management teams, nras helplines and every one on this site-so look forward rather than looking down. take care

  • Oh I know. It could be worse however from the first rheumatologist saying she doubts it's any inflammatory condition and could be vit D deficiency, to then having xrays and seeing her boss it was just a shock to hear "it's ok there's plenty of good treatments and we'll sort that out".

    Thankyou for replying

  • It's scary. I thought maybe my brain was playing tricks and my symptoms were In my head but turns out the xray bloods and examination show otherwise.

    Thank you for replying. Hope you're feeling ok about your new diagnosis. Take care

  • Hi Julia

    I'm really sorry to read that you are in tears, but so pleased you have been able to post on the forum to get some support. It can be a big shock not only getting the diagnosis but also being told about the treatment. It might help you to speak to someone on our helpline when you feel able to.

    We're available Mon-Fri, 9.30-4.30 on 0800 298 7650. We will hopefully be able to offer you not only support but also information, to answer some of the questions you will no doubt have at this early stage, and that might offer you some reassurance.

    Kind regards

    Victoria

    NRAS Helpline

  • Same here and its my right hand too so snap. But do not despair for the vast majority of people the medications work very well indeed. To be honest if I did not swallow a small white pill every evening I would not know I have RA. My life has been changed by Leflodamide and I bought some heeled rather posh and very expensive silver and blue shoes. It felt great to have no pain just a tiny bit of a shadow of swelling over my right knuckle and thats it and I pray long may it continue. So dry the tears and you know the worst, treatment may take a while to take effect but life is great really. Don't read the internet horror stories but be positive and so what if some minor changes happen, life changes every day really. And its important to not feel guilty about taking medications, our bodies are complex what works for one may not work for another just stay confident and positive.

  • Ah what lovely comments! Thank you for your reply. I know alot about RA already but today really came as a shock as I think I didn't fully prepare myself for what the outcome might be. I'm going to see what happens in the next few weeks with the other blood tests and mri scans etc but hopefully treatment will begin soon and I'll feel better about it all. I think I may be over thinking things as I'm worried about the future and if I decide to have more children (I'm 30 and have 3 children; 12, 10 & 1) and if I'll be able to change my career as planned now or not. Partner and family trying to keep me positive. One thing that came out of today is the baby weight that I haven't , yes haven't being trying to lose is now coming off! I had to be weighed at the hospital so silver linings and all that! 😂

  • Go for whatever you want irrespective of RA and you are not defined by a medical condition but by who you are. We all worry its called the human condition, change your career if you want to and remember life is what you make of it despite the odd hurdle and setback. So head high, pile on the makeup, buy some jimmy choo's and always contact the NRAS for some sensible advice if you don't understand some of stuff your advised. I saw my consultant privately so he had lots of time but even then I got home and thought I wish I asked that!!!

    I have some strong views about meds as RA in my case has affected my blood so its not just about the swelling you see and the pain you can feel, It can be life threatening and so I am just so happy that my meds work well and my risk of more clots is minimal. Stay happy, look at your children and look forward to being the mum of angst ridden teenagers thats the real struggle, how did I not do time for mine I do not know lol xx

  • Haha I'm laughing out loud right now! What great advice! I'm definitely going to buy myself some new shoes this wkend, I haven't bought any for quite a while.

    So sorry to hear it's in your blood also, can't be nice at all buy glad you're well managed on meds.

    I think I will change my career now - can't hurt to try.

    Positive thinking from now on!

    Thank you so much x

  • It is a real shock, isn't it? I cried too, and ranted! But 6 months on I feel soooooooo much better, both physically and emotionally... The meds are working for me, and chances are they'll work for you too. :)

  • I really hope so! It's a lot to take in isn't it but I know a fair bit about RA, however I think that scares me more somehow.

    Hope you're doing ok on your meds now.

  • I am, thank you. :) It has taken a couple of changes (first hydroxy then methotrexate tablets, now mtx injections) but now I'm getting sorted...

    Can I ask where/how you learned about RA? I thought I knew a fair bit too, because my dad had it (or PsA, like me) but in fact that info was a bit out of date... ☺️

  • Oh that's good. Trial and error with meds isn't it.

    Well my Nan has RA herself so I know a fair bit of information from her but I also used to know people that worked at NRAS so gained alot of knowledge. They have lots of information. I've also done alot of reading on labtestsonline.org.uk. it can be scary but I prefer to be well informed.

  • I do too. It makes me feel less out-of-control if I know as much as poss. :)

  • Hi just seen your post . I think I was stunned when I was first diagnosed. I had a diagnosis of SLE for 24 years so initially thought some of my symptoms were down to a Lupus flare. Turned out to be RA. My feet and right hand were the first be show symptoms then other joints joined in.

    You have some really sound advice and I can just reinforce there is a medication out there with your name on it. And loads of support here and on the NRSA helpline and information docs.

    Sure there are down days, but who doesn't, but there are good days as well.

    The only thing I can suggest is keep a diary of how you are and how it is affecting you, it will help you when you next see the consultant.

    Take Care and best wishes

    Smithfield.

    I must admit I envy medway lady her blue and silver new shoes.!

  • Thank you so much for your reply. It's so nice that everyone on here is so kind and full of advice/support. Medication- I hope it doesn't take long to work out what they'll put me on. I'm now waiting my apt for Mri scan as well as another rheumatologist apt withing 3 weeks he said as he wants me back in to discuss treatment. Since my apt on Friday my feet have been painful which I've hardly had before now so wonder if it's just aches and pains or RA. Will keep notes and take them with me to apt. Really struggling with my right hand at the minute though as it's just so stuck, my wrist doesn't move more than 30% and I don't seem to have individual use of my fingers. It's exhausting and I'm so worried I keep talking about it too much and getting on people's nerves.

    Anyway sorry for long post.

    Hopyou're enjoying the bank holiday.

  • In all probability he/she will start your meds at the next appointment when there is a clearer picture of what is going on.

    Quite a few of us on here wear hand splints. They are not exactly a fashion statement but they do help reduce the pain and I think in some cases help straighten the joint.

    Mind were measured and fitted by the hand therapy clinic if there is not one in your area ask for a physio.referral as they provide them as well.

    Try keeping your feet elevated and rested for a while to see if that helps. Hopefully it is just over doing it.

    Take Care.x

  • It probably is over doing things. I will ask about wrist splints as I really struggle and I just have no strength in it, gives way if I try to lean on it.

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