What's the point. Appointment waste of time

cagneyfan

Hi again,

Could anyone who's been for a rheumatologist appointment tell me if they had to undress to underwear for the examination and how thorough the medical was.

As much as I didn't want to have an examination, I did think it would be more thorough - but would like to get some facts of others before I start stressing out about that too.

I don't know what my next step is.

Do I complain to my gp, write to the rheumatologist or write to the pain clinic to say how upset I am? (next appointment February next year!)

My worry is that now I'm going to be diagnosed (if I get a diagnosis) based on inaccurate and incomplete information. This means I could end up with a cocktail of painkillers for something that I don't even have. Worse still, I may be on pain killers to deal with pain, when I could possibly have been put on medication that may even cure the problem.

I FEEL LIKE SCREAMING!!! I'M ALSO WORRIED THAT I'LL LOSE MY RAG WITH WHOEVER I SPEAK TO. THESE PEOPLE ARE MEANT TO BE TRAINED, QUALIFIED AND USED TO DEALING WITH PEOPLE - MY A**E THEY ARE!

seven-day-weekend

Oldernotwiser wrote: »

And I know which sort I prefer!

Me too. It doesn't matter if they don't say 'there there' as long as they get you better!

To the OP, wait and see what happens, you may be pleasantly surprised with the treatment the specialist recommends. xx

Edited to add: Just read your latest post, oh dear, not very promising. Go back to your GP and tell him/her how you feel and ask them to explain the consultant's decision.

sunnyone

cagneyfan wrote: »

Hi again,

Could anyone who's been for a rheumatologist appointment tell me if they had to undress to underwear for the examination and how thorough the medical was.

As much as I didn't want to have an examination, I did think it would be more thorough - but would like to get some facts of others before I start stressing out about that too.

I don't know what my next step is.

Do I complain to my gp, write to the rheumatologist or write to the pain clinic to say how upset I am? (next appointment February next year!)

My worry is that now I'm going to be diagnosed (if I get a diagnosis) based on inaccurate and incomplete information. This means I could end up with a cocktail of painkillers for something that I don't even have. Worse still, I may be on pain killers to deal with pain, when I could possibly have been put on medication that may even cure the problem.

I FEEL LIKE SCREAMING!!! I'M ALSO WORRIED THAT I'LL LOSE MY RAG WITH WHOEVER I SPEAK TO. THESE PEOPLE ARE MEANT TO BE TRAINED, QUALIFIED AND USED TO DEALING WITH PEOPLE - MY A**E THEY ARE!

Ive never taken my clothes off and your first appointment sounded just like mine as I posted above, my rhummi did blood tests and xrays of my hands and feet after my first appointment, I then had scans of my hands and feet and at my next appointment we went over the results and RA was diagnosed and I started disease modifying drugs.

You havnt given the rhummi a chance, thay are not god and they need tests to find the answers.

SingleSue

I didn't even get that!

I got the examination (undressed down to underwear) and that was it...no blood tests, no xrays and no follow up appointment.

Just a letter to say that because eldest has confirmed EDS, then it is very likely I have it too.

Trialia

cagneyfan wrote: »

Could anyone who's been for a rheumatologist appointment tell me if they had to undress to underwear for the examination and how thorough the medical was.

I had to undress to underwear, was examined, checked for tenderness and instructed to move my limbs and head and walk a few steps to show the consultant my range of motion and the ease or difficulty involved. I also had eleven vials of blood drawn for further testing, followed by a chest X-ray.

That was November first of last year. I subsequently had a formal diagnosis of EDS hypermobility, and appointments scheduled with the physiotherapy and occupational therapy specialists. I now have regular appointments with both OT and hydrotherapy (the latter starts next week), have been fitted for a wrist brace to start, and have another appointment with my consultant rheumatologist for July.

shays_mum

Jojo_the_Tightfisted wrote: »

Sue, you do know that not treating the inflammation in autoimmune disease can lead to it affecting your heart, don't you?

Please reconsider about having treatment - as soon as you get something that works, it's like a switch that transforms your life.

OMG!! i didn't know that :eek:.
After being diagnosed for EDS3 & autoimmune disease - that was it - no explanations nothing . I have every sympathy with op, despite the diagnosis, i am still caught between loads of 'specialists' who all contradict each other .
I have a great specialist rhuemy, who i can only see once a year, which will be this Feb, then the local rhuemy who took lots of xrays & loads of bloods, but no follow up appointment - apparently i am not in her caseload.
Then the podiatrist who tells me to wear flat shoes, not addressing any of the issues like inflammed tendinitis & deeply painful dent in my spine for years now.
Then, there is the physio's who keep changing every few months, never addressing any area of my body apart from waist down & last but not least the 'highly specialised' hand therapist who metaphorically just shrugs her shoulders & insists no treatments have been documented on eds, so i should do what i feel is right!!.
I mean sheesh, when i tried to convey what all the running about was doing to me (my DD has been diagnosed as well as my mum) physically & emotionally, i was sent to a psychologist who was meant to be treating me for 'catatraphasing' everything & suggested i should go to a pain clinic as the pain was in my head

Sorry for the rant, but i am so fed up......:(

sunnyone

SingleSue wrote: »

I didn't even get that!

I got the examination (undressed down to underwear) and that was it...no blood tests, no xrays and no follow up appointment.

Just a letter to say that because eldest has confirmed EDS, then it is very likely I have it too.

This is the appointments for arthritis referal/diagnosis Sue and not HMS which was done 30 years ago, I have never felt the need to see a rhummi speacially about it because its already in my records so all my specialists can see it and they do mention it and no doubt things have changed over the last three decades for diagnostic appointments/referals for HMS (or EDS as it now known, I did ask my rhummi to re-examine me for a definitive group of EDS but she said that there is no point and I agree really because it wouldnt change anything and I dont need a diagnosis for treatment or benefit purposes)

SingleSue

I had been referred to the rheumi because the physio had gone as far as she could and wanted to see if they could help me with more specialist help..the same with the doctor, wanted to see if there was anything going on.

I had never (and actually still haven't properly) been diagnosed with HMS or EDS but have been diagnosed with arthritis (wrists and hands age 19/20 and spinal age 30) but there was never any investigation into why...although I do remember the physio freaking out at my knees hyper extending backwards in my mid 30's and being told off by the physio at 18 for touching the backs of my hands to the floor but there was never an explanation as to why I shouldn't do those things.

All in all, it was rather disappointing and now I have nothing...no physio, no hydro, no-one else to see, nothing...just been left.

And still no definitive reason just a vague, very likely to have EDS. If I had a reason, I could work with it and move on, who knows, it may not be EDS at all but something completely benign and nothing to concern myself about.

I don't worry about the benefit side of things as I have no intention of claiming, I just need something to work on in my mind or even just something to update my medical records so that it is there if I go up about something else that could be related.

popty

I don't know if this will be any help but I am disabled (rheumatoid arthritis) and was wheelchair bound at 41. The attitude towards my treatment changed for the better quite drastically when a new doctor decided I should have 'acute depression'. I didn't actually have depression but as the doctor said no one would be surprised if I did. I played along and found attitudes at appointments much improved.

cagneyfan

Hi again,

spent the whole weekend in stinking pyjamas, never even bothered to wash or brush hair. Would've stayed in bed if it wasn't for the fact my hips hurt - you know, the ones that never even got a mention by the Rheumatologist.

Reading some of the posts is absolutely soul destroying. When will the medical profession ever learn that people just want to be able to have their say, and hopefully be listened too.

Obviously I want a condition that can be cured - don't we all? But I'm not stupid either. I'm quite prepared to deal with whatever I have and whatever treatment is needed.

But what I don't want is a false diagnosis and be taking meds for something that I may not need. It especially worries me that I may end up on a cocktail of drugs (dreading the expense, on benefit but don't qualify for free prescriptions) that may mask pain - and what happens if I end up with something else that just gets lumped in with the original (possibly wrong) diagnosis?

Whatever happens, I will not be able to settle it in my mind that what they say is wrong with me, is accurate. Because it would have been based on inaccurate and incomplete information. What a wasted appointment in regards to my time, his time, money etc.

I don't know what to do next. I wish doctors etc would read this site and pass on the info to all hospitals.

It would seem to me that patients are the irritants who get in the way of what would otherwise be an enjoyable job for a medical profession.