Hi all i follow this site for help and advice .i appoligise in advance for bad spelling after having a stroke . In Feb this yr i was sent to see a specialist do to shoulder and bad hand pain which included pins and needles also numbness swollen knuckles ect,while there i asked about temple and jaw pain i had been having for over a year asked is this Pmr the reply was what is PMR.cut a long story short have not been back.but was sent to pain clinic only to be told i have Fibromyagia .now a locume has told me it is temerol arteritis but has given me no medication to eleviate the pain which is driving me nuts .also dr keeps refering to my headache but they are not head ache it it temple pain radiating down to the ear with pain then jaw pain .just some advice please on anything i can do to help myself . My markers were 10 esr they are now 16 the base markers have been up from 15 to 30 and told my esr is too low Thank you all
Do i have PMR: Hi all i follow this site for help... - PMRGCAuk
Do i have PMR
Hi,
if your locum suggested Temporal Arteritis or GCA as it is now usually called - then he should have referred you to a rheumatologist or at least given you a trial of steroids. The temple, ear and jaw pains do sound suspiciously like GCA…. and not everyone has raised markers, but many doctors doesn’t seem to know that.
Is your jaw pain there all the time or does it just come on when chewing/eating?
If the former, then the pains could be TMD -see link -
nhs.uk/conditions/temporoma...
If the latter, then GCA definitely needs to be considered..
I’m not saying it is GCA, but it does need to be ruled out, so you do need medical advice on this. If your GP is not helpful, then try nhs111 or A&E…
Good luck, and please let us know.
Thank you for the reply the pain in my jaw is there even with out eating and sometimes feels like he pain is just there all the time .x
Okay -that’s not usually the case with GCA (won’t say never) -so maybe a TMD issue -that can give pain in the areas you describe…
Silly question maybe -but any chance of a dental appointment?
Tried umpeen times to get a dentist appoimen but the usuall reply is why you have no teeth, due to them falling out also due to osteoporosis and anadronic acid i also have lost 100 bone top and 95 bone bottom nothing wrong with my teeth just all were very loose so no dentures either and my last dentist has now gone private .thank you Dorset Lady for the link have just read through it but will keep reading and see if anything is what i am doing write or wrong.xx
Trying to get a dentist’s abysmal…. and sorry you are having such a time trying to get a proper diagnosis…
Managed to get a doctors appoinmet next thursday hope i can get a properp diagnosis or some test one way or the other .x
Hope so, please let us know how you get in….
Just update DL had my doctors appoinment today and gave him a list of what has been going on with the temple head and shoulder pains ect he says they are all the symptoms of temple artertis ,but even tho my stats has gone up by 6points more they are still low he ordererd a scan and gave me 40 mg of preds to see if they help.then will see him again in 5 days time.
Okay… well at least you have a plan and extra Pred to help with symptoms… keep a diary so you can inform doctor at next appointment of how things have been.
Thank you DL for the help and information from the link you gave me about TMD and Temporal arteritis being similer.think now i may have a doctor who reads my list and listens .x
Good to hear about doctor…always helps.
Morning DL well shock of my life this morning had my follow up appoinment with the GP i saw who put me on preds was happy to see pain was reduced, asked if i had heard from Rhumy department which i should have done within 72 hrs of starting preds,i said no have heard nothing so he said he would chase them up.well this morning my phone hasn,t stopped ringing with 3 appoinments tomorrow for Ultrascan on my head ,and appoinments at Rhumy clinic . This is the same Dr who told me last month to make a appoinment with some one else as i have too much going on ,what a change in manner when your locum Dr can read what you are exsperiencing instead of just pretending to listen.sorry for long rabbating on .x
Absolutely!!!!!
Wow - must have a pre Christmas lull in the diagnostic department. 😉 pity doc is a locum.
Let us know how things go please.
I do tell people quite often that a locum can be a Good Thing - lots seem to worry about it.
Follow up Had my Rhumy appoinment total waste of time was dissmissed as soon as i sat down ,never answered any of my questions threw a load of big medical words at me and when i asked explaining i not long had a stroke so needed plain english he looked at my ultrasound scan which i had only just finished having said i dont have temprol arteritis and dischrged me ,so i ask is it TMD he looked shocked and asked how i new about that sent me for a exray and closed the door. What a jobsworth he was made a complaint and waiting on a new appoinment.
Oh blimey- so sorry to hear that, what a shambles. So does that mean you are back to GP in the interim until you get another appointment with your “oh so helpful friend”.
Yes back to GP while i wait for another referal asked not to see the same Rhumy ,fingers crossed
Morning all well finnally got my doctor to put in a 2nd oppinion request which i recieved over the last week for june only to recieve a letter this morning saying it had been cancelled and 2nd oppinion refused as i had been accessed iam in so much pain atm from head to toe so appologise for any spelling mistake. Spoke to my doctor who has suggested PALS which i will do today and also she said of i get now were to come bk to my GP and we willsyart from scratch to get a diagnosis .i have neen put on Buprenorphine ptch 5mg for artritis and fibro pain whitch does tke the edge off and pregablin for we hope will take the edge off nerve pain but that just make me sleep sorryfor long rant.appreciate any advice plz.x
If you want responses from anyone more than DL or me, you need to post this as a separate new thread so that others see it - it is just the way HU works and only people who actively saved this thread )not many) and the original author get notifications of new comments.
Personally, I would write to the CEO of the Trust as well - PALS are unlikely to achieve anything and it always comes with the risk of them all backing each other up. I think your doctor's idea of starting from scratch is better.
Agree with PMRpro about writing to CEO of Trust, and GP starting from beginning again.
As NHS has refused a second opinion … any chance of trying a private appointment with another one, you can get suggestions for good ones from other members… just raise a new post stating roughly area you can travel … and ask.
Hi thanks for the reply am in North West merseyside and have spoken to my stroke nurse who is goeing to write on my behalf to the trust, also looking at going private to another hospital even if it is not Templeral Arteritis a diagnosis would be great then i know what im up agaist.
Yes you do need to know -good luck with finding a helpful Rheumy
Thank you.and PMRPro for all the advice
Glad you complained - that is NOT acceptable at any appointment and absolutely not at a first. Did he at least examine you - a proper physical hands on exam?
Nope quick run over my head no were near my temples or jaw just shock i asked about Tmd and said i shouldn't know about that.
Someone who needs to learn that not having a medical degree doesn't mean you are totally ignorant ...
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