Tongue issues

[Sharice21]

Hi I've been tested for GCA and came back negative all tests done by rheumy are negative but now started having tongue cramps/ stiffness hard to explain ,any ideas anyone?gp hasnt got a clue

[Nextoneplease]

Hi Sharice I don’t have any personal experience of this apart from a tiny bit of tongue stiffness for a day or two when I reduce dose.

If it’s any more than that I strongly suggest you get back to the rheumatologist, report the symptom and ask for a review…. Better to be safe than sorry 😊xx

[Sharice21 in reply to Nextoneplease]

Not on steroids at present as potassium keeps going up and down so gp wants a month clear stable ,its been 2 weeks now,it first happened bout 6 months ago and gp thought it was a 1 off anxiety thing,then a fortnight ago it's near enough daily but just for a split second most of the time while drinking fluids

[Nextoneplease in reply to Sharice21]

Well, I’m a bit baffled I have to say! There are some ‘Related Posts’ on tongue issues (to the side of this thread on my phone). I wonder whether you’ve seen these? Maybe some ideas on there?Good luck xx

[PMRpro Ambassador]

HOW have you been "tested" for GCA? There are no definitive tests for GCA - unless you get a positive ultrasound or biopsy. Nothing that can be said to be 100% accurate as a negative result.

[Sharice21 in reply to PMRpro]

I had a biopsy,I've had pet ct scan and more blood tests than I can count,not sure what theyve tested for but rheumy keeps saying everything negative

[USAGCA in reply to Sharice21]

Still does not mean that you don’t have GCA. What symptoms, other than the tongue pain, made them think of GCA?

[Sharice21 in reply to USAGCA]

Migraines and severe pain in 1 eye and temple,aching limbs mainly around joints,weakness and fatigue, not sure what I'm supposed to look out for with GCA the rheumy seemed happy to take it as neg after biopsy

[SnazzyD]

Hello, what a worrying time for you. When you say “all tests” what do you mean? Diagnosis of GCA is tricky and negative tests don’t always mean it isn’t GCA, even a biopsy. All my tests were negative but they still treated me as GCA because of my symptom history and the great response to 60mg of Prednisone.

[Temoral in reply to SnazzyD]

I was also asymptomatic on many things...but got a diagnosis through a blood test that looks for inflamation spikes...ask for this. Also had biopsy...waiting for results today. But steroids brought spike right down. Press for another appointment...take care.

[Sharice21 in reply to Temoral]

I have the inflammation marker in my bloods that is the 1 and only thing I do have

[Nextoneplease]

Hi again Sharice 😊

I have read that jaw and/or tongue claudication can be signs of GCA, which is why I think you should seek medical review without delay. While your tongue cramps don’t sound quite like typical claudication (stiffness and tiredness of the muscle), as we know, there seems to be no such thing as typical in GCA and PMR 😳

So…..don’t ignore it - get back to that rheumatologist xx

[Sharice21 in reply to Nextoneplease]

Thankyou for your help,I've emailed the rheumatologist and explained what's going on so hopefully she will get back to me

[Nextoneplease in reply to Sharice21]

Glad to hear this Sharice 😊

[PMRpro Ambassador in reply to Sharice21]

There are other causes of the GCA-type symptoms, for example other inflammatory arthritis affecting the neck so do keep pushing. A former member of the forum from Kent was being managed for PMR and possible previous GCA - even identified by Prof Dasgupta - but when she transferred to a leading rheumy in the north of England and travelled to see her, the diagnosis was changed to anklyosing spondylitis and the treatment to a TNF-inhibitor biologic. Haven't heard from her since - must be helping! She had tongue symptoms as the most prominent feature - but also night time pain that was earlier in the night than you would expect for PMR.

[SheffieldJane]

This stiff tongue symptom sounds like one of those peculiar symptoms that can point to a diagnosis. Like the others I urge you to return to your doctor. It is listed alongside the jaw claudication.

[cycli]

Hi Sharice21. I have GCA and had jaw claudication and cramp in the tongue. It affected my speech significantly and was an early symptom the doctors thought indicated a stroke. They tested me for that and released me. I had this two to three months prior to the GCA really taking over so please go back and be firm. Do you have any other indicators like tender scalp. pressure in the temples, pressure behind the eyes like they are being pushed forwards, headaches either temple and top of the head lights in the eyes and blank areas when you look forward, any and all of these however mild or severe are indicators.

[Sharice21 in reply to cycli]

I have a constant pain in 1 eye and feels like a finger gas been placed over 1 corner ,constant sweating and headache ,do you still have the tongue thing now?and did you have a stroke?

[cycli in reply to Sharice21]

Hi Sharice. No I didn't have a stroke. They cleared me.I get twinges in the tongue when I've had a long day and am tired. Not very often and nothing like before I was on pred. The constant pain is not good. I had very bad sweating and wherein the head does it manifest?

[Sharice21 in reply to cycli]

Glad to hear your not feeling as bad,pain mainly manifests in right eye and socket along temple, n am sweating like I've stepped out of the bath

[Nextoneplease]

Sharice, you said you had a feeling like someone had a finger in the corner of your eye..,..does this affect your vision? And have you heard from the rheumatologist yet?

Really the level of your concern makes me feel you do need a medical assessment. If you don’t hear back from rheumatologist and/or you’re worried, I suggest you go to A&E to be checked out.

Wishing you all the best xx

[Sharice21 in reply to Nextoneplease]

No doesnt seem to affect vision but the eyes so sore all the time from the pain,havent heard from rheumatology yet and was at a&e last week with this ,the dr didnt know what it was ,and day after I contacted my gp who didnt know either and passed the buck saying go to the dentist

[cycli]

DENTIST...are hey bonkers..Opthalmologist maybe. Maybe go to your nearest optician and have them look at you Sharice since a&e and dr's don't have a clue. If your headaches are temple and your eyes are pressured and your tongue cramps i think you should suggest they take you seriously.

[Nextoneplease in reply to cycli]

Good idea cycli 😊 Sharice, you should be able to get an optician appointment quickly. Look for one that takes part in the MECS scheme ie looks at eye health and doesn’t only do eye tests. Our local one is brilliant .

See FAQs for details of MECS

or google ‘MECS near me’

Wall the best xx

[Nextoneplease]

Example of leaflet to give you an idea of the scheme:

bbbc.org.uk/wp-content/uplo...

I think they’re likely to refer you to A & E, but at least A &E would have some ophthalmology input…..

[Sharice21]

I've been to the optitions ,that was my first stop cos I thought I needed my glasses changed,rhuemy also had me in the eye hospital where I've been given the all clear,I've had ct scan on head and sinuses,pet ct scan done on full body ,temperal biopsy and a few things that are not covered here

[cycli]

Sounds like you have covered the tests. Great if you don't have GCA so fingers crossed for you. However, please keep a watch on the symptoms. If any we have highlighted suddenly raise their heads then please go back for a check. Just because all their tests show nothing doesn't mean nothing is happening. The body hs a way of flagging up indicators that their tests don't register.

[Nextoneplease in reply to cycli]

Agree cycli

[Sharice21 in reply to cycli]

Just an update,rhuemy got back to me via email ,didnt mention the tongue issue n just said you've got polymyalgia rheumatica and I'll see you when I can fit you in,feeling deflated ,no idea what that is

[Nextoneplease in reply to Sharice21]

Hi Sharice Polymyalgia Rheumatica is the PMR that we refer to on here. Many or in fact most of us have it - it’s linked to GCA - not sure if that’s what you meant? x

[Sharice21 in reply to Nextoneplease]

Oh I see,how silly am I,thanks nextoneplease I'm going to have to do some reading to find out what ot is /what it does,and its linked to GCA 😔no getting away from that one😥

[Nextoneplease in reply to Sharice21]

Lots of people have PMR without GCA though so although linked, we don’t all have both!! Good luck with your research - there’s loads in pinned posts and FAQs on here as well as other sites like the NHS one x

And hope you get an appointment soon 😊

[cycli]

You've been through the wringer Sharice. You are obviously aware of PMR. Nice to have a rheumatologist that is so confident, but then they all seem that way. He'll fit you in!!!! what sort of attention is that. If you have PMR you need relief NOW. If you don't why is he fitting you in. If you have onset symptoms of GCA which is possible then leaving you until he has the time to be bothered could be too late. You have had more than enough stress to trigger PMR and GCA. Trust your bodys reactions NOT the medics. push for more immediate attention NOW.