And now?

[Eisbaerin2]

Hello all,

It has taken me a few days to work up the courage to post here after my last appointment at the hospital.

I had an MRI at the end of August and last week saw another "unspecified" registrar at hospital. It was in fact the same one that had arranged the MRI but I have mixed feelings about him. Last time he worked the patient files back to front seeing the patients who last arrived first until someone complained and they realised the mistake. He apologised by saying they normally give him the files the other way round... My appointment was nearly 3 hours late because of it. This time I had the 2nd appointment of the day and the first was sitting next to me waiting ( it was 9:20 by then) when the doctor strolled in with his coat and bag and sat in the office opposite us. We watched him check stuff on the computer and playing on his phone for 45 minutes through a window before he got up and opened the door to act surprised that no one had brought him the files that were sitting in front of the door in a box as " they normally bring them in"! So over an hour late already when starting... Hmpf.

I was due to see the actual rheumatologist I am supposed to be under end of August but got a cancellation letter a couple of weeks before that telling me is receive a new appointment as soon as possible. When I hadn't heard a thing by about 10 days ago and rang in to inquire I was told a letter with an appointment had been posted a week ago. I hadn't received anything ( and still haven't!) and asked to know the date. They told me the 30th of November! I lost it then for the first time ever and told the lady on the phone that was just not good enough and I wanted to know my MRI results and I needed an appointment earlier. After a bit of me insisting I can't possibly wait til November or even later I got an appointment the next working day (Monday). The MRI scan I had should have been in June but because the request for it apparently got lost and I only got a date when I rang up and inquired why I haven't had any correspondence. Meaning my scan was end of August and the day after I got back from a two week holiday and after 5 weeks off work as I work in school term only. I didn't know that they were only meant to look for inflammation or I would have said beforehand it might not be a good idea after a long rest. I was feeling great before the scan!

Anyway I didn't know, had the scan and was now told by the doctor that there was no inflammation showing in my scans of my feet and pelvis and lumbar something ( lower back) and the only abnormal thing was a bulging disc which he wasn't concerned about as it wasn't pinching the nerve completely ( yet). I told him about me being better on the day of scan and the rest I had but he dismissed that with the words " the MRI machine is very good and sensitive". I felt stupid for saying but not really reassured.

He progressed to say it was all great news because I now don't have inflammatory arthritis but non- inflammatory arthritis and to treat it with paracetamol and ibuprofen (and the naproxen I got prescribed by my GP for tendinitis that helps me when I feel bad too).

I am however not sure if I feel good about this as I don't think this is the whole story. I am 40 and being told this is just wear and tear and to take paracetamol ( that doesn't do a thing for me) feels like I'm being fobbed off. Am I overreacting? What do I do now? Wait til the " cautionary review" in 6 months time or what can I do?

Sorry this has been rather a novel and probably a bit confusing and rambling but I can't face going through it again and try to shorten or clarify right now and hope it makes sense... Thank you for reading!

[Braecoon]

Oh my goodness, not a good advert for a smooth and professional Rheumy service and one that would inspire any confidence, no wonder you have felt the need to let off steam. Well done for posting, this is an amazing forum with lots of kindred spirits who know exactly what you are going through and have experienced varying levels of the Rheumy service, sometimes very good, good, poor or downright disgraceful. The NHS is experiencing great challenges at the moment, what with austerity measures, difficulty recruiting and retaining specialist staff (nurses and doctors) resulting in rapid turnover of staff, hence only getting to see locums or registrars, which then leads to poor continuity of care = disillusioned and highly frustrated service user (not the basis for building a therapeutic relationship with your treatment team).

I am impressed that you took 'the bull by the horns' albeit out of utter frustration and anger, and assertively expressed your needs and demanded better service. You have to be your own champion to survive the system when it is not functioning at its best, you need to become knowledgeable about your condition and be assertive to to get the best out of a poor disorganised service. I am sure that you are now aware that using this forum can help you on all those fronts (lots of peeps who have been there and 'got the T-shirt'). Please also consider putting in a complaint it is the only way to start improving a very poor service and lots of patient complaints forces NHS to improve (after all they have patient satisfaction levels to meet). Some other forum members can advise how best to do this without compromising your relationship with your team.

The nature of RD is the complexity of and myriad of symptoms which is evident in the forum's postings. It is very frustrating when test results draw a blank and diagnosis is questionable, again read some of the postings as you are not alone. Important note: you are an expert on you. You know your body and know when something is not right, again you have to be proactive ('a dog with a bone' mentality). Start to keep a daily record of symptoms, take pictures of any swellings or anything untoward, as it is easy to forget to mention things in a consult and again you maybe having a good spell when you see the Rheumy. As well as my record of symptoms, I make a list of points that I want to discuss at my appointment. Hang in there, use the forum for ranting, for support and advice, and to let us know how you get on. You too will hopefully 'get a t-shirt' and the right answers that will equip you to manage your condition. Kind regards, Anne

[Livingston]

What Braecoon said but also - please don't be taking both ibuprofen AND naproxen. One or the other. They're both NSAIDs and it's dangerous to double them up.

[Hidden]

Have you got a good GP you can discuss this very unsatisfactory appointment with I wonder? GPs usually are the ones who deal with osteoarthritis and your might refer you for a second opinion somewhere else if you explain what you've told us here.

I agree it is very hard to trust doctors if they behave in the manner you've described. Unacceptable - keep pushing as you did over the MRI result. For many of us it is a battle and I've had to learn so much on this journey and have had to change habits of a lifetime to get heard. RA is just one form of inflammatory arthritis and I wouldn't be at all happy at being diagnosed with severe OA at your age either if my instincts said this didn't feel right.

[flow4]

Oh health professionals can be SO unprofessional sometimes!! It can be very frustrating...

I had a diagnosis of severe early onset OA until recently too... Now ultrasound has shown up inflammation and erosion in my hands. If you think there's more than that going on, gather as much info as you can, and find out what tests and other steps will show or rule out other problems... Good luck!