Thank goodness finally got my date for first appointment

Hi everyone,

I have today received the letter from the hospital with a date for my first appointment with the rheumatology department. I am now going to write a list of my symptoms and questions I want to ask, need to start now as I will remember things between now and the appointment on the 31st August, still seems a long way off but at least I've got a date, I have been reading various blogs and I hope that I get the time with the doctor to go through my list and be able to answer my questions and not in and out within 10 minutes. My OH is going to go with me so that he is going to hear what the doctor has to say and hopefully remind me of the things I want to ask and not leave feeling that nothing has been explain. My GP has been great but again her hands are tied until I have seen the consultant.

I just hope this appointment goes okay and can get the answers I am looking for without any shocks thrown in.

Last week I was not able to take my meds for 24 hours and I realise now how bad I have become in just a short time the meds keep the pain just bearable but being off them it was a nightmare, won't be doing that in a hurry again no matter how I feel.

I have applied for a blue badge but was turned down as yet don't meet the criteria,( by the explanation I must be wheelchair bound or on high allowance of dla ). I am just in the process of applying for dla but guess that will be a waste of time, at present get ESA but that is due to run out sometime in November, (I was turned down after assessment, but appealed and sent in plenty of evidence to which it was reinstated funny ah!!).

Well I am happy now that got a date and hopefully will get some assistance now with this condition but not going to get too excited just yet in case the hospital isn't what is expected, fingers crossed though well I would but they might stay in that position, better not just to be on the safe side.

Hope everyone is feeling ok cyber hugs to everyone.

Aileen

8 Replies

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  • Hi Aileen,

    Glad to hear that you have got an appt. Always good to take someone with you too listen in. Take your list of questions and mark them off as you get the answers so you don't miss anything.

    Hope you get started on some useful drugs.

    I wag diagnosed in Feb and started my treatment in march response was very good, but side effects rubbish. Now after break of 7weeks,and and back to stage 1 I have been commenced on methotrexate injection. Just had a steriod injection to help me get thru the pain till the drugs take effect.

    Good luck and keep us posted.

    Carole x

  • Hi Aileen. Just a few bits of advice for you. I know it's hellish but I recommend you do indeed try taking very little by way of pain relief 24 hours before your appointment so the consultant can see how much pain you are actually in on the day. Especially to be avoided are anti-inflammatories because they will need to see signs of inflammation to make a diagnosis. If you are in so much pain and have so much visible redness and swelling that these things make no difference at all to you then appologies but otherwise that's my suggestion for what it's worth.

    Secondly if you do have visible swelling and haven't already done so I advise you to take photos and print them off of these swollen joints because it's just typical of the way things go that you might not have much to show on the actual day - and also photos sometimes capture synovial swelling especially well. Also you can then hand this over to the consultant for his or her records which may be useful for them.

    Finally I advise you to go in with an open mind as rheumatology is a very complex area of medicine and RA can be very difficult to diagnose uniess all the arrows(indicators) point very clearly in the same direction. By keeping as open mind as you can you might be able to avoid disappointment if a diagnosis isn't made there and then. Best of luck and let us know how it goes. Tilda xx

  • Tilda has said it all for you to take into the appt. I will only say best of luck. Sylvi.xx

  • All the best Aileen, you have our backing and we all wish you the best of attention, be a patient patient, because there willbe waits for test results. ~Do try for DLA I have and been refused now about to appeal, I lost my job so am in the process of ESA and I was diagnosed 18 months ago.

    Carol

  • Thank you for the good advice I will bear this in mind for the appointment, I have already had a Positive diagnosis of RA as I have a numb thumb and my GP referred me to the ortho department thinking that the carpal tunnel syndrome had returned( I have had operations on both hands in 2003). When I finally got this appointment I explained to the doctor that I also experience stiff joints in my hands and knees. He sent me for blood tests and 4 weeks later went back to see him and he informed me that had tested positive for RA and was going to refer me to rheumatology. It was abit of a shock, but I read all the blogs on here and find it most informative and helpful and sympathic for all the suffers on here, it is a horrible condition you are living with and the highs and lows that everyone experiences. I have noticed that I have got worst over the passed few months since I was last at the hospital in may I just didn't realise how quick and rapid this has taken hold.

    I will let you know how I get on and thank you again for the great advice.

    Aileen

  • Hi Aileen - I can see now why you are quite confident that it is RA now. But I still caution you to keep an open mind because only a rheumatologist can actually diagnose this disease and the rheumatoid factor is just one of several tests that will probably be taken before they can be 100% certain you have RA. The anti-CCP is usually the more specific test that only a rheumy can order - and it takes a while for the results to come back.

    If - and I say if rather than when, because you are obviously closer to diagnosis than many of us were at this stage - the rheumy makes you wait a bit longer then I would use this as a time to experiment on pain meds, diet, exercise etc. The drugs we take for these inflammatory arthritis's are very powerful and can have unpleasant side effects for some of us so it's best that they are absolutely sure before you start. Good luck! Tilda

  • Hi Aileen

    Glad to hear that your appointment has come through, it is always a very difficult time and being well prepared for the appointment is very important but as Tilda so wisely says RA can be a difficult diagnosis to make and there may well be some questions which can't be answered at this stage. NRAS produce a very good information sheet which lists several important questions for use at a first appointment - you can read this on this link nras.org.uk/about_rheumatoi... . We also publish a very useful booklet entitled Raise it with your Doctor which again has some helpful tips for use at your first appointment. You can download it from the publications area of the website or if you would like a hard copy then give the helpline a call on 0800 298 7650.

    Best wishes

    Lorraine

  • Aileen, I stay in Airdrie which looks like i am close to you. Where are you going? Monklands? Wishaw General. I have had a great experience with both hospitals, i first saw my rheumatologist on 17th April this year and get a full hour with her every time i see her. Good luck with your appointment. email me if you want abannister at sky dot com

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