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.
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