Frustrated after 1st rheumatology appt

[Determineddebbie]

Suicidal more like .... Her opening line was at 54yrs I was too young for pmr or gca . I had gone prepared with short written history . Clearly sectioned meds . Bloods . Symptoms . Etc . Within minutes she was tying me up in knots and I said I couldn't cope with her line of questioning . She asked me 5x if I'd had shoulder girdle stiffness to which I replied my arms were heavy and I couldn't lift them above my head . She said I didn't have pm'd based on not having shoulder girdle stiffness dispite my saying I had neck stiffness and no range of flexibility in my hips before taking steroids . I recorded the whole interview thankfully . I came out wanting to commit suicide

[PMRpro Ambassador]

It's strange - yesterday evening I was thinking about you and nearly came online to warn you it was likely as you must be fairly young to have such a young daughter. But 54 is perfectly reasonable to suspect PMR, the guidelines now say over 50. We do know that doctors don't use the same words as the patients do and that leads to confusion. However, quite what not being able to lift your arms above your head is other than shoulder girdle stiffness I don't know!

I'm sorry - I don't know what to say to you - did she make any other suggestion or order any tests?

[Determineddebbie in reply to PMRpro]

Near the end of interview as I was shuffling paperwork I knocked my mobile and screen lit up with 'recording' she saw it and immediately offered me second opinion and Mri scan on hips and totally changed tone so blessing in disguise that she saw it . She then kept changing her mind as to tapering steroids . 1st taper was by 10 mg from 40-30 mg and then I said what shall I do if I get headache she then said taper 5 mg over weekend then 10 mg Monday then 5 mg every 2 weeks so that I would be down to 15 mg by scan . Full bloods taken today too

[PMRpro Ambassador in reply to Determineddebbie]

Good - that was part of the reason that we suggested taking someone with you and unfortunately a 13-year-old isn't enough back-up. It is amazing just how much that concentrates their minds when they are bullying, for, whatever some people might say, bullying it is.

As Suzy says - a lot of us have had the same experience, their don't know or don't want to know much about it and some definitely think PMR is "beneath their skills". However, you do have a start with the bloods and MRI and what happens next can wait until they are done and reported. Having them may help if you DO end up having to see someone sensible privately - who will then add you to an NHS list if they think that's what is needed.

[Determineddebbie in reply to PMRpro]

Thank you very good advice . Just a waiting game now I guess . I'm speaking to my gp tomorrow ( telephone ) consultation to get prescription for steroids

[suzy1959]

I got PMR at 52 years and was initially told I was too young by 3 Rheumys. It took a PET scan to confirm the diagnosis, 2 years into my journey! I am now on my 4th Rheumy as I have found them either useless or critical("You must reduce the steroids"). Happy with the one I have now.

I think a lot of us have realised that they don't know that much about these conditions and we, as patients, have to inform ourselves- this forum helps so much with that!

You could request a second opinion or if you can, pay to go privately to a recommended Rheumy- it doesn't have to cost too much for a one-off .

The other point is that if it isn't PMR/GCA then what is it???? and what are they going to do about it? This really shouldn't be a battle but instead a collaboration between doctor and patient. Who am I kidding? That's never going to happen!!!

If it helps, you are not alone, there are lots of us on here in our 50's and we can all support one another through the rough times!

Take Care of yourself and use your anger in a positive way-to take action!

[Determineddebbie in reply to suzy1959]

Thanks Suzy , it went so badly I was a quivering wreck in minuited.... I felt like I was going mad and making it up !!. Thank Gid I recorded it . I have been offered a second opinion . Mir scan on my hips and Dexter bone scann which she said should have been done ages ago . I feel I should make a Complaint but don't want to rock the boat ? But I do agree with you Suzi , this forum is my lifeline . Thank you so much for support st this time 🏋

B

[CloudGazer6 in reply to Determineddebbie]

I'm sorry to hear your appointment was so stressful. Those first consultations can be very nerve-wracking and it can be a difficult path to a formal diagnosis, on both sides.

I wonder if trying to record the conversation in an undisclosed way (apologies if I'm wrong in my interpretation of the situation) might have made the situation even more tense. In my experience doctors don't mind people recording conversations if it's for helping recall all the mass of information at a later date, for instance, but in my view it's not fair to record someone without being open about it. I'm sure we wouldn't be comfortable to find out after the fact that we were being recorded but would be only too happy to do it a collaborative way.

I hope your second opinion proves a lot more helpful. Good luck!

[Determineddebbie in reply to CloudGazer6]

Apology accepted for your misinterpretation of recording events . It was for my own use. I openly put it inbetween us but she was too busy with her opening disclaimer you look too young for pmr . Thank you for taking time to reply

[CloudGazer6 in reply to Determineddebbie]

I definitely apologise. It sounds as if you went into the appointment having set everything up as best you possibly could. I completely understand your frustration and disappointment and really hope that the next opinion is much more helpful.

[Anne-NRAS]

Hi Debbie, I am 51 and diagnosed of PMR last month- get a second opinion as soon as you can through your GP.

I suggested to my GP that I might have PMR after trying to get the stiffness and mobility challenges sorted for about 8 weeks. He said the one sure way to tell was to try steroids/pred for 5 days. Within 3 days of taking 5mg of pred I felt like a new woman. I then came off them so when I saw the rheumatologist I was back to the state I was in prior to the 5mg of steroids and was given the diagnosis and a treatment plan (20mg of pred a day, tapering down every month)

I hope you get something sorted soon x

[Determineddebbie in reply to Anne-NRAS]

Thank you , she seems hell bent on dismissing me and now home I realise I could have said a lot more but got tied up in knots . I too responded well to steroids they'd relapsed once off . She seems to have an answer for everything to my detrement . Will see what happens as I taper this weekend I'm speaking to my gp in the morning via telephone re: tapering and what to do if I relapse as it will be weeks before appt for scan ? . Thank you for your input . I hope you continue to do well , message me if you like anytime 🏅

[SheffieldJane]

I'm sorry that your appointment with the Rheumi was so negative. Honestly some people who happen to be good at science have no people skills at all and shouldn't be allowed near them in a so called "helping" capacity. So even though she made you feel pretty desperate, the outcome was the same, same tests etc. as if you were text book PMR. Did she suppose that it was a compliment to be told you are too young for a disease?

Doesn't she know that it can be therapeutic to have a definite diagnosis?

We all go through the awful " am I a hypochondriac?" Stage as we drag off to the GP with loads of apparently unconnected symptoms , laced with real unhappiness or depression.

Well done for taking charge and getting that recording. Good luck with the reducing. I am as sensitive as hell these days, to the point of paranoia. A nap helps Lord knows why, but it does. It doesn't make it any easier to fight your own corner though. Keep it up Determineddebbie. With that moniker you just have to. X

[Determineddebbie in reply to SheffieldJane]

She laughed a lot through the consultation ... I cried a lot !! . However we shall see how it all pans out . I really did feel like what's the point ( not determined at all) but have calmed down and will embrace the tapering ... Not good timing with school holidays and a holiday booked and new baby grandson . Don't have time or wish to be ill at all . I wish she could have seen my determination instead of tears of frustration. It's so lovely to have you all on here ... You really are lifesavers . I thank you from the bottom of my heart ... I don't feel so alone . I wish you continued remission x

[Celtic PMRGCAuk volunteer]

Oh dear, Debbie, sadly we hear of similar experiences all too often. But there are some excellent rheumatologists around so, unless she changes her attitude following the MRI results, keep in mind that you can always seek a second opinion elsewhere. Depending on whereabouts you are in the UK we might even be able to point you in the right direction if it comes to that. Meanwhile try and de-stress (PMR/GCA love stress), and continue to enjoy that baby grandson.

[Determineddebbie in reply to Celtic]

Thank you so much for encouragement ... Means a lot . Night night x

[Judigardener]

As some on here know. I am on my third rheumy.

The first one did no bloods-- poked me about -- charged me £200.00 and said I had Fibro. Second one was better. But he was hell bent on me tapering down the steroids -- I stuck to his plan. Relapsed. the GP said it was too fast!

Having been in difficulties pretty much most of this year I am now on my third (delightful and kind) rheumy. As others have said,' I would walk (as if!) 500 miles' see him.

As we all know this is a nebulous disease. We can look so well and feel so awful.

J

[Determineddebbie in reply to Judigardener]

Lovely outcome thank you for taking time to reply

[paddyfields]

To us these consultations are so important and we pin so much on them but to the rheumy we are just one among hundreds they see and everyone has an off day which is not much comfort to the patient.. I get on well with my rheumy but at my last appointment, put back to nine months,she was running 45 minutes late, and as my blood results were not in the file due to lack of communication between local areas, I was aware that here was a golden opportunity for her to catch up as she had little to go on.

I managed to get in a request that I should be able to request an injection if my hip became too much and for a dexa scan which my GP would not arrange. Both of which she agreed to . When I got home I got my blood tests printed out and sent them by snailmail to her. She wrote a lovely letter thanking me for this and that the vexed question of non-communication of local health areas as regards as blood test results was being looked into county wide. I had also formed a negative impression of the Rheum. help line but tried again, this time resulting in an injection the following day for what my private physio has said is piriformis syndrome which can often follow a trauma such as the fall downstairs last October in which my GP showed no interest whatsoever despite osteopenia and my being 76.

I suppose what I am trying to say that, even though it goes against the grain for many of us, you have to be pushy on your own behalf as no one else is going to do it whereas when us oldies were young you waited for the all-knowing expert to pronounce and decide everything. The management of long-term conditions is evermore critical because we are living longer but often with multiple problems.

[PiersC]

What an amazing thread of replies. I am sorry to hear what you went through determineddebbie, a real horror story. I do wonder about a 'what if' - that being, what if you had not heard of this web forum and the many experts and experienced members here that you could draw knowledge and comfort from. If you had gone into that consultation totally unprepared you could still be in limbo for months. Not an outcome that anyone would want. I am only 3 months into the journey and know I have a long path ahead, but also know that I am not the only one and being able to draw on the experience of those around is a boon. I am right in a 'reduction' at the moment (17.5 to 15) and the previous way of doing it (a big drop overnight, and standby to receive pain for your efforts has now been modified to a gentle reduction that is manageable. I would not have been doing that without the advice I have gained here. As you go on your journey I can imagine you will be reading many of the comments here, I do, and it will help - I am sure of that. It does for me (and hundreds of others).

Good luck and stay strong.....

[Determineddebbie in reply to PiersC]

Thank you piers .. You have all ' litterally been my lifeline' ... That and patti Boulaye's song ... The gem of his gown , probably on YouTube .. Thanks guys your amazing and hope tapering goes well piers

[Bittebitt in reply to Determineddebbie]

I feel so much for all of you who have such bad experiences with your rheumatologists! I worked as a nurse at a rheumatology department myself for many years, and, even if that hospital had a very good reputation for treating its patients with respect and dignity, there were some patients that had bad experiences. Especially in the late 1980'ies and the whole -90'ies, when Fibromyalgia was considered as "something wrong above your collar". Had to comfort many patients. Tried to talk to the dr.s about it too. No use. Now, I'm a patient myself, at the same hospial. Of course, I won't have the same experiences as you do, but I feel a bit of the same uncertainty. As I have had a year when I have been through many examinations due to something wrong with my blood and bone marrow (got the diagnosis chronic myelomonocytic leukemia on my birthday(!) last thursday), I must say that the haematologists that I have met have been of a totally different kind. Exeptionally empathic all of them, and taking the necessary time to comfort me and explain things. Many specialists could have something to learn from them. Having said all this, many rheumatologists are good with patients. We just don't write so much about them. Maybe we should?

[Determineddebbie in reply to Bittebitt]

Sorry for your diagnosis , I wish you well with your treatment journey , thank you for taking the time to write your experience with Rheumatologist ... I will be the 1st to praise one when I come out with some dignity intact and not that my life hangs onto wether they're on a budget or having a bad day . I nearly left 7 broken children behind . What's above my collar was ok before I stepped into their remit and like you now we have no choices but to take the treatments . But not the mud treatments .

[Determineddebbie in reply to Determineddebbie]

Miss treatment !!!

[peanuckle]

I went to a rheumy like that - came out of there in such a state. Went back to my GP and told him I wasn't going to there anymore. He took over my case and has been wonderful ever since. Listens to me and trusts me to handle the pred.

[Determineddebbie in reply to peanuckle]

How lucky for you to have s good go . I phoned mine and he is overseeing my steroid raper as Rhummy kept changing the dose every time she opened her mouth , so thanks for your good advice . I feel safe with my gp . Lovely that yours trusts you

[valrene]

Hi Determineddebbie I know exactly how you feel, 5 mths of constant pain and stiffness, went to see Rheumy all he did was send me to a physio, had bold tests there that day, phone call 4 days later blood test came back with anca p and MPO antibodies, went back to see him, still didn't get anywhere might be vasculitis or PMR or both, still in so much pain just take pain killers, like someone said I believed in what he was doing, my Rheumy nurse phoned to say she had made an appointment with a older Rheumy, he diagnosed PMR straight away with 20mgs of steroids, 3days later jumping for joy no pain or stiffness, 2mths later went back to see my Rheumy he didn't believe his diagnoses so had to reduce steroids, all pain and stiffness came back, a year down the line still waiting for diagnoses all because I believed he new what he was doing, 2weeks ago felt so suicidale with the pain, down to 5mg of steroids went to my appointment so so angry totally ruining my life all because he is younger and didn't believe the other Rheumy diagnoses, I told him I could not go on like this any longer and wanted something done about it now, he is still not convinced even with high inflammation levels, he has put me on Leflunomide because methotrexate upset my liver, so don't let any Rheumy fob you off I'm not standing for it any longer, have been advised on this site to find another Rheumy my GP is going to refer me to the other Rheumy, if this drug doesn't work may take up to 6weeks I'm going to see someone else, steroids made me put on so much weight he had the cheek to say to me if I got some weight off I wouldn't be so tired, so please try not to feel so down every time in the last 18mths I went to see him was so posative I would have an answer, but came out and sat in the car in tears, but don't let that happen to you they are not God and some of them just don't have enough knowledge, so just try and be strong don't let it wear you down, if you aren't getting any where with her don't wait like I have and ask for a referral, hope things do get better for you, like you said this site is amazing makes me feel I'm not making it all up and it's just not all in my head, please stay strong. Val.

[Determineddebbie in reply to valrene]

Thank you Val , the illness and miss diagnosis itself is enough drudgery without having to shop around to find a sympathetic Rheumatologist . My you've been on a journey and still strong enough to reach out and help others ... I'm starting tapering steroids today to get scann in a few months to determine what's going on with my hips . Already dreading tapering , school holidays and had booked low key holiday so wifi see . It's like Russian roulette . I actually called a meeting with my eldest children to sort out the care if my youngest daughter should I die !!! At 54 yrs of age :(. But thanks to you all I have support . I wish you well , please keep intouch x

[valrene]

Thank you for your reply, I had a nervous breakdown 7yrs ago still on medication now it was caused through people I worked with, when Rheumy was rude to me I just went to pieces and was suicidale again, then I thought I'm not letting one person ruin my life again by making me sad, it made me feel stronger so I was ready for him last time, I wouldn't of been rude because I'm not like that, but I just stuck up for my self when I went in and just said I need something done now I can't put up with the pain any longer, and was prepared to tell him I need a second opinion, so try not to stress your self out which will only make you feel worse, just try and be strong don't let Rheumys ruin your life, people who don't have this disease really don't under stand how much pain and fatigue you are going through, thinking of you Val.

[Determineddebbie in reply to valrene]

Thanks cal , I was actually sacked from my job for 18 months off sick . I was under occupational therapist and was too ill to fight their descision. Which as a single parent with a mortgage and not wanting to claim benifits was awful so I have empathy with you and admiration that through your pain you've reached out to help me in mine . Please keep intouch x

[Determineddebbie in reply to Determineddebbie]

Sorry I meant Val ... Spell check !!

[valrene in reply to Determineddebbie]

So sorry to hear that Debbie, can a firm actually sack you for being ill, I have retired so luckily didn't have that problem, but if your trying to pay a mortgage with this disease and working it must be so hard for you, the only thing that helps me now that I have listened to my body is having a nap in the afternoon it's the only way I can get through the day and it helps the pain and stiffness, definitely don't wait for your Rheumy to make up her mind any longer ask to see someone else now, take care Debbie thinking of you. Val

[birdwatcher]

Debbie, I am so. Sorry to hear about your experience. It sounds like a complete horror show. I just pray that you are going to get the correct diagnosis. How can these So called doctors be so ignorant. I know there will be people on here that will be able to advise and support you. I really wish you all the best, and will be thinking of you.

[Determineddebbie in reply to birdwatcher]

Awe thank you that's so very kind of you . I have a very deep faith , it's what holds me in times like this and all of the love and kindness extended on here . X