Rheumatologist

[Carathedog]

Had my first rheumatologist appointment on the 16th June, was a very thorough appointment, he doesn’t think it’s PMR

He arranged for blood tests and had five X-rays taken that day,, I’m still waiting for the results , I have spoken to two GPS, who say they can’t access the results, I know this isn’t true, as a retired GP, who’s a friend, said, they can all access patients results.

My rheumatologist said I have to get my steroids down to about five, before he’ll see me again, I’m currently on eight. So in the meantime, do I just carry on in pain for three months.?.

I’ve also been on Opoid patches, which had absolutely no effect on my pain. My gut feeling is to gradually wean myself off Steroids and Patches and see a Chiropractor privately, it surely can’t be any worse

Any thoughts

[123-go]

Yes, GPs are able to access results but, if yours is like mine, won't pass them on to you because he/ she didn't request the tests. I would advise you to ring the rheumatology secretary and ask for the results to be sent to you. Your blood test results will show anything flagged up.I've looked at your history and you sure have been given the runaround! Until you have a firm diagnosis I'm not sure that a chiropractor can help you. Others may disagree and of course it's entirely up to you if you want to to make an appointment to discuss your symptoms, etc.

It must be so frustrating for you on top of the pain you are experiencing. I do feel for you.

[Carathedog in reply to 123-go]

Thank you so much, very helpful. I just got an appointment for MRI scan next week

[123-go in reply to Carathedog]

That's a step forward-good luck. Let us know those results-when you get them! Just a reminder that you are entitled to see anything that's written about you.

[Carathedog in reply to 123-go]

Thanks

[PMRpro Ambassador]

WHY doesn't he think it is PMR?

Chiropractor - I had a very expensive experience with them and they did no real good, would have been even more expensive had I bought all the supplements they wanted! What did help me back then (PMR no pred) was Bowen therapy and my lovely, very reasonably priced, osteopath. She saw me every few months when things went pear-shaped, Plus Pilates and aquafit at the gym. The chiropractor was about £25 a session and they wanted unlimited 2 sessions a week! Yeah ...

The only thing that helps PMR pain is pred - you can sometimes live with PMR without but it isn't very nice! If it really isn't PMR maybe he can offer something else - but the process of finding out may be painful and dispiriting.

[Carathedog in reply to PMRpro]

Thank you, yes, it really gets you down, sometimes I feel they want to get rid of the pain instead of finding the cause of it

[PMRpro Ambassador in reply to Carathedog]

A diagnosis informs that action - if it is PMR they don't know why/how and it is symptomatic management, same with GCA, But almost no autoimmune disorder can be cured

[Carathedog in reply to PMRpro]

They don’t think it’s PMR, because pains are not in the normal places, and markers are normal, Pains are very similar to Sciatica , but, according to them, it can’t be, because, I can touch my toes !!

[PMRpro Ambassador in reply to Carathedog]

Just been talking about this. There are different versions of PMR and I am absolutely convinced that one version manifests with a lot of myofascial pain syndrome which causes a lot of back/leg pain that is very like sciatica - the piriformis muscles traps the sciatic nerve and irritates it. I can also touch my toes - so an MSK specialist (a physio with an extra bit of paper) informed me I couldn't have a bad back! I can also put my hands flat on the floor: not heard of hypermobility sir?

It is infuriating ... I was going to say there isn't a textbook PMR - there is, but it is only in textbooks. Patients are different!

[Carathedog in reply to PMRpro]

That’s really interesting, I’m sure there are different versions, also would verify the fact that absolutely no painkillers have helpedGoing to see if I can find out a bit more. At the moment, I’m struggling to wean myself off these Opoid patches

[PMRpro Ambassador in reply to Carathedog]

Which presumably did nothing either? I did find that lignocaine patches can help the muscle spasm - enough to be more comfortable.

[piglette]

My GP was unable to access the rheumatologist’s results until the rheumatologist had “released” them. I think there is some switch that says OK every one else can now access the results. It meant my rheumatologist was able to look at them first.

[Carathedog in reply to piglette]

Yes, possibly, but after almost six weeks, surely he can release the results!,

[piglette in reply to Carathedog]

I had a rheumatologist who did not release the results for three months. She just had not bothered to check on my visit!! Showed her up for being lazy in the end.

[Carathedog in reply to piglette]

Not really good enough is it, we’re relying on these people to help us

[piglette in reply to Carathedog]

She was absolutely useless. She wrote my notes in some exercise book she kept in her large handbag and presumably that never hit my main patients records either. She had also ordered me to have xrays. Some other rheumatologist discovered that my hip was virtually non existent six months later when she saw me, as the other rheumatologist was not available.

[123-go in reply to piglette]

That makes sense.

[jinasc]

I get copies of every letter that is sent to my GP at the same time as they receive them. I have a file going back 16 years.

All I did was advise my GP and any Consultant I saw that I expected a copy of letters.

Follow this link and read up on letters and copies.

england.nhs.uk/professional...

[Nominem]

I can see the results of tests on my nhs app and copies of letters sent after consultation are available through patients know best on the same app.I had to fill in a form at the at the GP surgery to enable this. I am not sure if this helps .

[AshPen9 in reply to Nominem]

Hello Nominen, I have the NHS app and can see test results and meds. As far as I know I have filled in the form to access everything possible. How in the app do you get to 'patients know best'? I am waiting for a consultant's letter to get to my GP's at the moment, so this access would be really useful. Maybe not all practices offer the same access.

[DorsetLady PMRGCAuk volunteer in reply to AshPen9]

No, they don’t and that’s the problem for many

[Nominem in reply to AshPen9]

log into the nhs app see the heading popular services press view your messages it takes you through to messages press conulstations events and messages press this you are then taken to messages and on line consultations this service is provided by Patients know best press continue this then leads to a tab headed events and messages and it then becomes possible to see and download clinic letters qppointment letters. i receive an e-mail when a new item is added. I had to sign aform at my GP's surgery to access medical records. i hope this helps but I notice Dorset Lady says not all surgeries offer this

[Carathedog in reply to Nominem]

Thanks, will give it a try

[DorsetLady PMRGCAuk volunteer in reply to Nominem]

Just done this as an experiment -don’t seem to have “online consultations” as an option.

Checking the App my surgery uses (SystmOnline) the Messaging service us not offered by my surgery it would appear.

Although can access all the same stuff as is on my record with GP surgery on the NHS app.

Seems to be an individual surgery choice as to what you get and what you don’t-initially had appointments facility -but since covid that seems to have been rescinded.

Must ask the question!

[AshPen9 in reply to Nominem]

Thanks very much for this Nominem. I think that my surgery mustn't have signed up for that part of the service. When I go into messages there are no options, it just says 'you have no messages'. Worth a try though, and I may well ask why our surgery hasn't signed up to it because surely it would save them lots of phone calls.

[DorsetLady PMRGCAuk volunteer in reply to AshPen9]

Just replied to Nominem -similar

[AshPen9 in reply to DorsetLady]

Great minds! I also used to be able to book appointments prior to the pandemic. I thought maybe they had stopped it because it prevents them from triaging you doesnt it?

[Amkoffee]

I was taking opiate meds for years for lower back pain when my PMR struck. The opiates did nothing for my PMR pain. I also found that massage made things worse. I did not see a chiropractor for my PMR. Steroids worked almost immediately and my blood work showed raised inflammation so there was no question. However, over the years I developed osteoarthritis in many joints causing my rheumatologist to question my diagnosis. She was convinced I had RA. But after several tests (blood, xray and MRI) she is finally convinced that it is not RA.

[Carathedog in reply to Amkoffee]

I suppose it’s a hard one to diagnose, I think we all really just want to know what’s causing the pain

[Sharitone]

Surely, if the GP writes to her to say you need review she'll have to review you? If you get stuck on 8mg, they can hardly leave you there forever.I got lumbered with morphine patches this week - 'if the CRP is low, it can't be PMR, can it?' and I'm quite glad they're not helping. Don't want the extra set of side effects!

[PMRpro Ambassador in reply to Sharitone]

"if the CRP is low, it can't be PMR, can it?"

Not as simple as that though. In a lot of patients the markers don't rise when they are on pred even if they were raised originally - and they aren't raised in everyone then. They can lag behind the symptoms for months sometimes - has to be enough inflammation for long enough for the markers to rise in a lot of people.

[Sharitone in reply to PMRpro]

Sure. I think I didn't write that very well. It was what the GP implied to me.

[PMRpro Ambassador in reply to Sharitone]

Yyes - I realised that. I didn't express what I was meaning either

[Sharitone in reply to PMRpro]

🤣 No hope for us then!