GP has referred me, Google has scared me -GCA

[RachelW1]

I need some advice please.

I went to the doctor today to check a lump in my neck - all good he doesn’t think there’s anything to worry about.

I cheekily mentioned that I had another thing to ask him - I’ve had a ‘small mouth’ for as long as I can remember. Always had problems getting those plate things in my mouth for dental X-rays etc but over the last couple of years it’s definitely got worse. I can just about fit two fingers between my teeth, I have to cut up my food small to eat it and if I eat something chewy my jaw aches. Thinking it might be a muscle or bone issue, the GP said he thinks it’s Jaw Claudication which is associated with GCA. He asked if I heard of GCA?

No I say thinking, I’ll google that. He asked about any other symptoms, I said no, not knowing what GCA is but I do have a lot of stuff going on relating I thought to menopause.

The GP said iI need to be referred and mentioned a place near Castle Coch (I am in South Wales). Anyway, I’ll be honest, I’m scared. Particularly scared of going blind.

Now finally to my question:

How long should I expect to wait for my appointment on the NHS (I know it will vary )weeks? Months? Obviously if it’s GCA I want to be on steroids asap. I will overthink this so badly until I get my appointment.

thank you so much.

[PMRpro Ambassador]

Hi and welcome!

First of all - DON'T google - at least, now you have found us!! Google isn't all bad. But it does tend to over-egg things and if you can't tell what is reliable and what isn't, it is scary.

There are many causes of a sore jaw when eating so GCA is only one possibility. And it is less common in younger patients - it does happen so I;m not saying you are too young.

Tell us what your symptoms are - the ones you thought were menopausal and anything else. Then we have a better grip on what is going on and we are less likely to talk rubbish.

In my experience, inability to open your mouth like that is more likely to be a tempromandibular joint problem than GCA. And the fact it has been going on for a couple of years suggests there is unlikely to be an acute GCA situation.

But first of all - tell us more.

[DorsetLady PMRGCAuk volunteer]

Hi and welcome,

As PMRpro has said, Google can be scary… brilliant at times, but not always.

There’s are a lot more symptoms to GCA than just jaw claudication… so please give us more info - and try and stop panicking [not easy I appreciate] and if you had shown more signs of GCA, I’m sure he would have suggested you start steroids there and then as a precaution.

[RachelW1 in reply to DorsetLady]

Thank you for mentioning that around the steroids. I was thinking after reading up on GCA why wouldn’t he have just given me steroids whilst I am waiting for diagnosis? That would make sense to me.

I didn’t tell him anything other than for years I’ve had limited range in my jaw - it’s not particularly painful but it is getting worse (more limited). He did ask me anything else.

[DorsetLady PMRGCAuk volunteer in reply to RachelW1]

So who is he referring you to - a rheumatologist?

[SnazzyD]

Hello, so if your GP is going as far as suggesting GCA, he should have treated it as a medical emergency. For example, I was sent to A&E straight from the consulting room. What is notable is that you’ve had an issue (“small mouth”) with what sounds like temporomandibular joint dysfunction for a long time. Long standing problems can lead to arthritis there. Do you know what, apart from jaw pain on chewing, lead him to go down the GCA route rather than TMJ dysfunction? Also, what symptoms do you have that you have been putting down to menopause?

[RachelW1 in reply to SnazzyD]

Honestly no. I told him that I was otherwise well as I am assuming things like migraines (I think relating to progesterone in my HRT cycle), trouble regulating my temperature brain fog etc are meno. Tiredness from disturbed sleep creates blurred vision at night and I have low energy but I am still working, going to the gym, socialising so it’s mild. I don’t tell the doc any of that so he just came to the conclusion based on my not being able to open my mouth because of a restricted jaw range.

[PMRpro Ambassador in reply to RachelW1]

I think he's jumped without thinking enough. Is there another GP in the practice you could see to ask for another opinion?

[RachelW1 in reply to PMRpro]

I am going back today to a doctor I know and trust to get a better understanding of what happened yesterday. Fingers crossed.

[HeronNS]

There are many things which can cause a lump anywhere in the body. As the referring physician said when I developed a lump in my neck mid-30s there could be a hundred reasons, about 99 of them not a worry. I had a biopsy (lymph node), which had to be postponed because in the middle of all this my father died (an expected death). So it was bad time. The diagnosis was sarcoidosis, which was a relief, and also a useful piece of information. I do not think any lump should be dismissed. As I was told, in nearly all cases it will be nothing of concern, in some it will be useful to know, and then there is the one time when you really should know because action must be taken.

[RachelW1 in reply to HeronNS]

The GP told me he believes the lump it scar tissue in my lymph node. I was unwell (cold) in July and Sept, the first time it swelled and went away the second time it swelled and reduced but didn’t go away.

He had scared me with the suggestion of Jaw Claudication and the link to GCA and then just sending me home. I googled it and things were coming up about it being a medical emergency and the complications - I panicked. I am so pleased I found you all.

Obviously I am going to get it checked out but it seems the Dr may have jumped to conclusions.

I might get a second opinion on the lump if it gets bigger

[Supertech]

Hi I had the same thing at the dentist with those x-ray things they put in your mouth. Difficultly opening wide enough to get them in and also opening my mouth wide enough to eat, pre my PMR diagnosis.

I also had terrible night sweats, often having to change my nightwear which was nothing to do with the menopause I might add. I had difficulty raising one arm too. The final thing which made me go to the GP was the fatigue, falling asleep sometimes at 11am when I sat down for my mid morning drink as well as most evenings dropping off after tea at about 7pm then dozing all evening.

I was put on 15mg of prednisolone and it helped straight away. I still get fatigued and have learned to pace my activities, I have got down to 6.5mg steadily using Dorset Ladies dead slow taper.

GCA was never mentioned and I have not had any symptoms of it.

I hope you can get sorted out to calm your fears and symptoms. I found it worrying at first as I had never heard of PMR but finding this blog and the charity website was the greatest help to guide and inform me. I look at it every day and it helps a lot to know that there is always someone to offer help and support. Xx

[Bonnie-ma]

Re your jaw opening problem - I am reminded of my own experience with this. I had an aching jaw and was unable to open it and was beginning to worry about an upcoming surgery and if I would be able to open my mouth properly to be intubated for the anaesthetic. My dentist was puzzled but a young doctor I was working with at the time asked about my current medication (long before PMR came calling).

This lead to the HRT I had been trying out at the time. I came off it and with a week I could open my mouth properly again - what a relief. I found TMJ problems listed on the info leaflet and on-line as a rare side effect of the HRT. Good luck but perhaps check side effects of meds you are on. I do now!

[Ambatu]

I was a bit like you and due an eye test. My optician nsisted I asked for steroids until.my diagnosis

[Grammy80]

Hopefully, you can get an appointment soon and get this sorted out. I'm so glad you are here on the forum. I'm in the States and envy the fast-tracking in the UK. I, too, am surprised he didn't send you to A& E. It may be a jaw issue due to your tiny mouth...best to know,indeed💞

[IlovePorridge]

Hi Rachel, I hope you are feeling more reassured having read earlier replies. Did you manage to get a second GP opinion? I am also in South Wales and have similar concerns re GCA. I have lots of other things going on, so keep putting my recent symptoms down to Sjorgen's, etc. I know I shouldn't. I'm interested in knowing where you've been referred to?Take care

[RachelW1 in reply to IlovePorridge]

I did go back for a second opinion. The GP thinks it’s just how I am built and the fact I grind my teeth and clench my jaw will be the reason why some times the movement is more painful or more restrictive particularly in the morning. There’s not really much can be done but the referral to the specialist will check for issues in the joint and test for arthritis etc.

Strangely there were not notes as to where I have been referred but as soon as I find out I will come back to you. All I know that the moment is it’s near Castell Coch, so Tongwynlais maybe?

I hope you find some answers soon.