I am having checks for possible PMR at my request.
Having suffered for the past four years with neck shoulder jaw and face pain eye disturbance and terrible drenching night sweats. I have almost self diagnosed. Although I am awaiting an appointment with Max facial as my ENT consultant said it was TMJ but the Dentist disagreeing.
The first set of blood results are back and I was showing as abnormal with the diagnosis of normocytic anaemia.
Rather than input Every result if you could advise me which parts of the test you would look for, I can post those and go from there.
Thank you in advance.
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Nonameme
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Your symptoms could well point to GCA which adds real urgency to a diagnosis because of damage to your eyesight. I would advise you to go to the emergency department to have your symptoms investigated. Emergency Opthalmology ( if possible) would produce more knowledge and expertise and get to the heart of the danger to your eyesight. Sight can be lost quite suddenly with GCA. The jaw pain, face pain and drenching night sweats are red flags for GCA which can also present with PMR symptoms like the neck and shoulder pain. Do you also suffer with headaches? This is also typical of GCA, but not all symptoms need to be present for a diagnosis. Let us know how you get on. Good luck!
I agree with SheffieldJane that your symptoms should be dealt with promptly, although you say you have been suffering for four years? Apparently one cause of normocytic anaemia can be a chronic inflammatory disease, and the anaemia is treated by treating the underlying condition - another reason to get a proper diagnosis sooner rather than later.
There is no definitive diagnostic test for PMR, although elevated inflammatory markers (CRP and ESR) are indicative of a problem. Generally speaking, if other possible causes for the elevated markers are ruled out, there is a trial of a corticosteroid, prednisolone (pred) in the UK, and a good response to a moderate dose can confirm PMR. GCA can be diagnosed through a temporal artery biopsy (especially important if you have bad headache or vision disturbances because it means the optic nerve is threatened) or by imaging, I think ultrasound? SheffieldJane would know more about that. A biopsy, if advised, would ideally be done before taking corticosteroid treatment, or very soon after, before pred heals the area. Initial dosage for Giant Cell Arteritis or Large Vessel Arteritis is much higher than for polymyalgia.
Hope you soon get the answers you're looking for. Do let us know how you get on, and there is usually someone here if you have questions or need support as there are members of the community all over the world!
Do you have results of CRP and/or ESR [inflammatiry markers]? As others have said if you have been experiencing eye issues and jaw pain then GCA should be considered. I see in a post on another forum you mention earache - that can also be associated with GCA.
If you try the chewing gum test- see link that - may help to rule in/rule out GCA -
Strangely yesterday I had a phone call from Max facial. I have been waiting over a year for an appointment and they suddenly had an cancellation for Friday more info after that consult.
I tried the chewing gum test and ouch is all I can say..
18 months ago I had my hair almost shaved because I cannot be able to put a brush through it. Anything that touches my scalp is excruciating.More information, as and when, thank you so much for your imput this far
Sounds like a pretty extreme suite of symptoms for TMJ issues! The lack of urgency is a bit worrying. You need a switched on A&E doctor (or decent GCA protocol), rheumatologist or ophthalmologist. None of the above specialist types are the usual go to for diagnosis and management of GCA or PMR. My journey was a bit different - I had scalp pain, neck pain and a slightly tender temple if one prodded it. I called 111, saw a GP, was sent to A&E within 10 minutes having called ahead. The A&E doctor picked me out of the queue and within 30 minutes I had 60mg Pred in my belly. Blood tests first, CT head next and ophthalmologist some hours later. The Pred was a miracle within 2 hours and along with the symptoms was the only basis of diagnosis. Bloods were normal and my eyes looked ok though he didn’t try very hard to look. Biopsy 8 days later negative but I had been marinated in Pred by then. Still treated as GCA. PET scan 3 weeks later negative but useless due to Pred.
As has been said, there is no definitive blood test for PMR/GCA. anaemia, whilst not specific can come with PMR. Also not specific but commonly raised are inflammatory markers ESR/CRP, but again they are not specific and aren’t always raised. Some doctors mistakenly think this is an accurate way of ruling PMR/GCA in or out.
Diagnosis is often made looking at the big picture and a balance of probability, plus ruling other things out, hence the shopping list of tests. One method to help with this is a trial of Prednisolone. A PET scan would be handy as it should show up wide scale inflammation in the body. An artery biopsy from the temple can give you a true positive but false negatives are common enough for even that to be unreliable. Some hospitals instead use a specialist type of ultrasound but it can’t be done by just anyone.
The inflammatory markers are what they take most notice off though all of them are only bricks in a wall of evidence and not 100% rock solid. ESR/sed rate and CRP are the usual inflammation markers. Liver enzymes are sometimes raised and ferritin. The clinical picture is also significant.
What you describe sounds more GCA than TMJ. I don't think TMJ causes drenching night sweats - GCA does. Have you also had any weight loss?
Most definitely though that is a whole other story. Had incontinence from diarrhoea from about 2 years ago every test known all negative. Then last August collapsed and into hospital with substantial bleeding pr. Colitis; diverticulitis then C diff with complications diagnosed but other than get on with it or have a bag nothing.
Over Christmas had a mini breakdown and as nothing was touching my pain decided not to replace my weekly Buprenorphine patch which was for a back problem they were reluctant to operate on. Over last few months have lost over 2 stone without trying within 24 hours of removing patch diarrhoea and stomach pain GONE and 4 weeks on no return. GP reaction oh. But morphine not replaced by any other pain medication which could account for my increased pain? So that is the bigger picture, pain fatigue sweats and despite fatigue no real restful sleep probably also due to pessary which has moved and is painful and causing difficulty with evacuations 😧. Been discharged by gyne back to GP who is unwilling to remove the darn thing.
Indeed but it did start one thing at a time but no one was ever willing to join the dots. Not until I was referred here on thr NHS App then I started to self diagnose but always never trying to tell the doctors their job but I think we just have to be a bit more involved and ask more questions and not be fobbed off with their dismissal of ‘normal’.
Have just got access to some of the other results from Monday. Every single one says abnormal no action needed. Apparently I also have acute liver injury but again no action necessary. What on earth is going on?
The computer automatically flags a result that is even a tiny bit outside the range - but within the limits of measurement error. A human looks at them and decides if they are concerning.
You’ve had good advice already including to get yourself to A&E.
If/when you do that I suggest you make sure they know you are worried about GCA. Once that is flagged they should be careful about making any decision to simply send you home.
If they do say they don’t think it’s GCA then I would ask them for their reasons.
I imagine no A&E doctor will want to have a missed GCA diagnosis and a blind patient on their watch.
Best wishes for that appointment. Write yoursellf a little cheat sheet, if you haven't already, so you remember to mention everything which has been going on which concerns you. 🍀
Hi well had my consultation with a dental nurse been waiting over a year for Max facial appointment which was brought forward. Given my symptoms to this past Friday.
No, it’s not TMJ, your nerves in your face and neck are being irritated and you may grind your teeth at night possibly no proof but will do you a mouthguard anyway come back in 14 days end of. oh don’t worry, your pain is real so don’t let them tell you anything different.
No, real examination, sat in a dental chair felt around my neck didn’t even look at my eye, or my ear on my neck, or my shoulder, or my tingling arms my throat nothing when I got outside, I just cried, no pain relief nothing so I guess that’s it.
Had a look at my medical records this morning, and with all the abnormals on the final one it said patient advised advised what I’ve not heard a word from anyone. Nobody’s contacted me what a lot of lies I think complaints formal or otherwise are going to be necessary, but that is not going to make me feel any better or diagnose anything or get me any pain relief.
hi again my head space at the moment is all over the place. Since an optician’s appointment today I have been trying to update my profile on here and it just does not appear to be working. Anyway following on from this a previous post I have been preliminarily diagnosed with GCA following months of increased symptoms of both PMR and GCA. and any /all help requests have been denied until this emergency appointment today. Following a breakdown last week following an awful experience in a& e I have now been diagnosed with a personality disorder and subsequent treatment thereof. No help for any ongoing medical problems and actually approval of me coming off all prescribed medication. I am now only on newly prescribed Mirtazapine and the dreaded lansoprazole restarted after weaning off after hospital stopped this a year ago.
This has been an awful week or so since the events in AE and a couple of days ago I went to bed exhausted and felt paralysed by pain when trying to visit the bathroom in the early hours which lasted well into the following morning I had to take some co- codamol which eventually eased enough to be able to move normally (for me) This pain problem continues daily with not being really mobile until after midday The pain is mainly left sided throughout my whole body -this has always been the same throughout this journey but recently my sight is suffering and my neck ears jaw temple and scalp pain is unbearable
Upon a thorough exam today opticians’ suggestion of Gca was agreed with chief optician who wrote i t on a piece of paper and told me to contact GP first thing Monday morning He seemed to think that with my symptoms and hospital appointments I must have received a blood test for this and this is why I am to call GP and check. I am pretty sure this has never even been mentioned and I can see nothing in recent tests but what would I be looking for anyway?
I am extremely confused and anxious right now my sight is deteriorating daily I can no longer read because of left eye have been diagnosed with double vision with no treatment so assume my reading days are over Can anyone offer anything that might help current state of affairs or any self help Sorry for the rant😡
If you have GCA and many of symptoms confirm that then you need a high dose Pred - and now… not on Monday. If you cannot face another trip to A&E then please ring NHS111 and tell them about optician’s comment, and really he should have said same thing.
If the optician thinks it could be GCA - you need medical attention andhigh dose pred now and not from a GP on Monday so please do as DL suggests. And be insistent.
The tests you would look for are ESR and CRP as inflammatory markers but they aren't 100% accurate since in up to 20% of patients they do not rise out of "normal range".
Any really good optician would have called the hospital and said they were sending a patient for assessment for GCA - mine in Scotland would have and did so any time someone came with such symptoms.
Called 111 and given a one hour slot to arrive which I did. Upon arrival told there is a one hour wait for triage. Waited and seen 45 minutes. Told they would check to see if I had a blood test recently whilst under maxofacial early in year. Said no blood test but dental Xray done for TMJ showed nothing so highly unlikely to be anything serious. Options given wait approx 7 hours to see doctor or contact GP Monday morning for definitive confirmation that I have or have not had blood tests ‘We do not have Eye specialists on the Island over weekend anyway I live on Isle of Wight so only general specialists available in AE anyway. ‘
I have just crumbled if I could I would move away from this once wonderful place to live I would our health service is virtually non existent at the best of times but weekends are indescribable! And to think it still operates when in 1993 they killed my daughter. Yes a whole other story major headlines at the time admitted in London Court in 1997.
"Said no blood test but dental Xray done for TMJ showed nothing so highly unlikely to be anything serious" I beg their pardon!!! I think GCA is FAR more serious than TMJ. What a shower.
I live in northern Italy but need to get my head round returning to the UK at some point. Scares me senseless even though my daughter is a nurse, has a house we are going to make a granny flat in so that I can if I must and it isn't far from Edinburgh or Glasgow. But the NHS is in a mess.
We can get sent to both or further afield A few weeks ago was sent to Fareham for my cataract surgery not a pleasant homeward journey as you have to vacate car and go on deck! It is a lovely place to live but we pay the price in many ways. For instance cheapest taxi quote return to Heathrow £1000👍, and as for delivery well Amazon and eBay are totally over the top namely will not ship anything with batteries or batteries themselves and not nail polish either! I could go on. Night night
I am sorry to read of your poor experience with health service on IOW. We are going there on holiday later this week and I am newly diagnosed with PMR. I hope I stay stable until my review when we get home 🙄So sorry to hear about your daughter, I can't imagine 🥺
Hope I hav’nt put you off😄. It is a lovely place but with limitations. We are due a nice weather week too this week so do enjoy.
Thank you, we know the IOW, have been going there since our eldest was two (he's 44 now). We were there two years ago. The IOW and Dorset are our holiday destinations of choice. Hubby visits family in Canada but I don't go far afield.
Well just goes from bad to worse. Put in online consultation Monday am. Received via NHS APP that a GP will call me Tuesday to discuss. Waited and waited no call ever came took a screen shotat 6pm of recent calls for info in case they claim they called. Spoke with my sister just after and she said she was having problems with surgery too. Same Surgery. She tells me she has had several callers during the day from surgery number which kept going to voice mail after only two rings. She could not understand messages and actually. Visited the surgery in person. They confirmed the calls looked like they were coming from their number but when attempting to both listen and read messages on her phone they said it was not them they would never leave that kind of message told her to delete as it was a scam. YES we later worked out the supposed GP who was supposedly calling me was physicians assistant calling her and leaving messages about me! By this time surgery closed and urgent help lost again for another day.
I am so sorry to hear all that you are dealing with. I was at Lymington Hospital recently and spotted they have a walk in centre. It's not an A&E but the hospital is pretty well equipped with scanners etc and not as busy as Southampton General. It would mean a trip to the mainland though which I know isn't always easy. Or you could phone Southampton General Hospital eye unit for advice? 023 8120 6592.
Thank you all. Latest update. Saw GP this am concerned , examined, hospital Consultant contacted. Urgent appointment this week, urgent blood test at hospital today, and steroids started today. At last all as it should be, phew. Will update along way but curtailing device use for a while as headache is almost instantaneous.
About time too. This use of phone consultation has a role in lessening the problem of getting appointments but you do need medical input too. And an option to be seen f2f when it is urgent. Either by a doctor or another HCP who doesn't have ideas above their station!
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