Morning everyone. Tomorrow I am going to a different hospital for a second opinion with the view to change. Does anyone have any tips please.
I have photos of swollen and red joints, the rahes on my legs, white toe nails and the open sores that appeared on my head recently. Also taking letters from Consults with Rheum at present hospital and from the dental hospital who think I have steven johnson and secondary sjorgrens. Oh and made a list of notes.
I have to go alone so that is not an option. Just worried about going obviously nervous which makes me forget things and I do not get things across well.
Any, advice welcome.
A snowy walk today will take my mind of things.
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moomie
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Hello moomie. Exciting times eh? I was so nervous before seeing my 'second opinion rheumy' that I stayed up all night at Travelodge (it was a fair distance / early appointment) and could only gibber like an idiot once I got there.
Thing is, you HAVE prepared and anyway many good rheumys will lead the consultation and pick up on a lot more than you'd think. I'd suggest not playing down any symptoms, but try to keep your input fairly brief. I practise summing up individual issues clearly but succinctly before appointments, there are always some things that are particularly difficult to describe adequately and they're the ones to practise.
The rheumy may not want to be handed your notes, I've yet to meet one who wants mine anyway. But you could underline the items that are absolutely essential to convey (could be all of them!) and learn them off by heart too. And there's nothing wrong with getting your list out just to check that everything has been covered.
Best not to diss your previous rheumy! My new rheumy did ask why I'd moved and I just mumbled really .... if I'd been asked to clarify I'd have mentioned being concerned that diagnosis wasn't as firm as it could be, that treatment not working as well as it might, mobility and quality of life deteriorating, pain worsening etc. In other words, focus on the disease and how it is not yet adequately treated rather than on the failings of the last doctor.
But you're a charmer you are and it'll all go swimmingly I bet! Don't worry about being nervous, they must see nervous wrecks all the time. Good luck, can't wait to hear more.
Thank you postie some very good advice there. I will take it all on board. Good point about my notes I will condense and keep them to myself. I will need to look because I tend to just pass problems behind me and forget once they have got better and do not like sounding like a moaned. My G.p who did the ref put on the letter that my current Cons had been ill. I would have to get use to a new one and build a bond so a good idea to move. Think I will just use that line. Fresh start.
I have an early bone scan appointment at 8am then Cons at10.15 so that should keep me occupied.
Hi-good luck - why don't you record what you want to say and listen back through it? You could always play it there (on your phone) if you get nervous? Take any blood results and a history/diary of your meds and health x
Moomie I hope I'm not too late with this and anyway I agree with all the sound advice you've been given. All I would add is, tell the Consuktant that the appt is so important to you that you feel nervous and are worried you might not ask all your questions without referring to your list and ask if they'd be kind enough to jot down their answers for you. Leave a large gap for this. My C does this all the time for me and appreciates that it's hard to retain all the info we're given. The emphasis nowadays is on patients taking personal responsibility for our care - this is doing just that. I think doctors are keen to help even though pressed for time. You're not asking for an essay, just brief notes that will remind you of what was explained. I hope it goes really well and he/she is a CC "caring Consuktant' - if not, ask to see a specialist nurse who usually has more time to help. Keep us posted!
I agree with Witness2 try to make an apt with a Rheumy nurse soon after you have seen the new consultant. As soon as you can after seeing him/her,add his opinions to you question list to refresh your memory when you go through it with her. You will probably have to wait a little while as I find Rheumy nurses are as busy,if not busier than the consultant.
Hi I went fir a second opinion last September , and the consultant was very understand and was given my diagnoses as primary sjorgrens and fibromyalgia , and sero negative lupus , he had no notes to go from , but the one I gave him but we a friend and I gave him a full history of my health issue since childhood , I also gave a copy to my gp , I am very luck to have the support of a good friend who got me to sit and talk and she wrote and then she typed up it all up was 4 pages long , with a time line to check my medical notes if they cared to.
Thank you everyone. I am left a bit bemused and not knowing what to think.
He didn't ask for an history at all. He had a couple of clinic letters myG.p had sent.
I did try to offer info and show him a few photos but he was not that bothered.
Had a quick look at my hands moved my legs and arms up and down.
He thinks it is psoriatic arthritis without psoriasis.
Asked for my G.p to prescribe my mtx inj . He already prescribes my other dmards and tablets. Actually he never asked what other meds I take.
He said anti tnfs can be prescribed if these do not work but not yet.
Looked at the MRI I had last year on my sacro region of my back when I was really ill with a flare. Old hospital said nothing inflammatory so wouldn't give me steroids luckily G.p did and I got better. Anyway he could see some white patches of inflammation so he wants another full body MRI.
Doesn't want to see me for 12 month! no Nurse appointment or any contact details. A little shocked at that especially since I am having problems at work off sick at the moment. My knees are giving me a problem and swollen. He didn't look at them.
Keeping options open got to see the Gp on Thursday.
Thank you. Didnt really get to ask all my questions or answers as such. Just feel a bit bewildered. My G.p said I needed more input but actually got less. I will just go over things and see what he says on Thursday. I think 12 month to the next appointment is a long time. No Nurse appointment or anything. Thing is I am off work at the moment and they are suggesting ill health retirement so a lot to digest.
Thank you for asking and thinking of me x
The appointment sounded pretty good up till the 12 month bit! I mean you came away with a diagnosis (perhaps not 100%, but sounds fairly sure about PsA), a treatment plan that includes option of biologics and an MRI in the bag.
But 12 months? Truly that's taking the &^%$! Might it be an idea to phone to ask about their helpline .... after all, most rheumy depts. seem to have them so that would be a reasonable inquiry to make. And then you may just get the opportunity to query the 12 month wait as well .....
Did you mention that you might be taking ill-health retirement? I can see that ideally you could have done with more of a discussion about your current condition with that possibility to consider. Yep, I think a phone call may be in order, you really need a rheumy nurse (at the very least) to talk a few things through with.
That s just my train of thought too Postie. Trying to look at the positives. It was the 12 month that threw me. Particularly since work is a problem. My previous Rheumy Nurse rang me today. Their OT are helping me with work. Anyway I told her how I went and she said just about the same. Was shocked at the 12 month I have to see my G.p on Thursday so will see what he says too. He wanted a dermatology follow up from him too.
Can I just ask is fatigue a big part of PsA ? It is really intruding on everyday tasks. One of the big factors with work too.
I've been told that biologics can help with my fatigue and as I've just started them, I'll keep you posted.
I hope they can sort out an appointment sooner than 12 months. I was taken aback after my last appointment to only be given one in 4 months! Of course a month later I was back with a major flare anyway but my PsA is not under control just yet.
I do hope the biologics work for you pretty soon. Thank you for that. Just trying to make sense of things. I am so stiff in a morning I have to use a stick before I ease up. Getting some pills out of the foil is a problem.
As jefflin says, fatigue can be a big part of PsA. The level varies, obviously, but for me it was atrocious at one point, I wasn't living really, just existing.
By contrast ..... I took 35 bags of rubble to the recycling depot last Sunday. Am I bragging? You bet! But only if it'll help at all 'cos things can and do turn around. I just think .... Biologics. And after the usual 3 month trial of Mtx, not after 12 flipping months. Perhaps your GP will look into that for you. So glad you are getting some support re. work situation.
Wow! I went for a walk with the dogs for 45 mins. We watched a football match on tv. Cooked tea and by 7.30 I was dropping off to sleep. I did ask the Consultant about the fatigue he just said cannot do anything about it.
Been looking at the beyond psoriasis site to get a better idea.
Thank you will have a good chat with my G.p.
Moomie x
Also, you have a really nice fireplace, love the fireguard!
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