Hi I'm really sorry to bother you. But I'm so worried. In January after suffering headaches and blurry eyes and colours seem to go lighter then go back to normal. and a very sore face, neck and shoulders I went to the optician who sent me straight to the emergency Eye clinic. The optician was worried I might have GCA. The consultant said its impossible to have it as I'm only 42. After lots of tests and blood tests he sent me home. I was so worked up I had to get valium from the emergency doctors. On the Monday my head and face and eyes hurt so I went to A and E who said my eye sight was fine and sent me back to the eye consultant the next day. He wasn't to pleased to see me but checked me out and said my blood results were fine so I didn't have it. However I'm still having headaches that come and go and go over both my temples. I have jaw pain eating, my right arm and both shoulders hurt badly, I can't sleep because of the pain and paracetamol and nurofen don't help. My eyes are still blurry and painful and colours seem to get lighter then go back to normal. I can't shake the feeling I have GCA, although very very rare in under 50s. My symptoms all match and I'm so worried I will lose my sight because they won't listen to me and keep saying I'm to young. Should I try to contact my own GP and explain to them what's going on and how worried I am? I truly don't know what to do and I'm ill with worry about losing my sight. Thank you, I hope you can give me some advice, I'm 42 and live in the UK X
Really need help please : Hi I'm really sorry to... - PMRGCAuk
Really need help please
Don’t worry, you’re not bothering anybody. What tests did you have? What sort of work or activity have you been doing? Do you have any other medical history or medications. It isn’t unheard of to have GCA under 50 but it’s rare. However, even if you don’t have GCA, did the doc offer any other cause?
I had blood tests done. The doctor didn't say much at all, he thinks it's all coming from my neck, but I can't shake the feeling there's something not right x
Ah, the magic blood tests that tell all, which they don’t because they have their limits. Did you ask what they tested for? I suspect they checked your ESR and CRP, inflammatory markers, saw they were within normal limits or slightly raised and decided it wasn’t GCA. This isn’t the recommended approach but many docs treat the numbers and not the symptoms. So, there is obviously something going on but it isn’t reasonable to say it isn’t GCA so good bye wit no plan for a diagnosis. When I went to A&E with GCA symptoms aged 54 I was at least given a CT scan after they gave me high dose steroids just in case. It’s not as if you’ve got some x-ray specs in the back of a drawer somewhere. Also, what did this eye exam consist of? Did they check your eye pressures?
You need to get to the bottom of this. If you feel A&E is a dead end because you keep seeing the same person, have an urgent word with the GP and perhaps they can get on with some urgent investigations. What I would say, and I shouldn’t have to because you deserve respect, but do try to avoid seeming hysterical. Tap, into that fear and make yourself a bit miffed instead and demand some action and explanations of how decisions are being made. Someone, has to take responsibility for making that diagnosis. Make a point of knowing what is being tested and why, this is your body and you’re going to do the best for it and make sure others do too. There are all sorts of things that can cause symptoms like this, so someone needs to find out what because you’re not doing this for a day out.
The emergency Eye clinic did scans on my eyes. My eye pressure was fine, but I had slight swelling being my eyes that the consultant wasn't worried about. I've to go for an MRI but it's a 12 to 16 week waiting list, my fear is I will lose my sight by then. I know it might not be GCA and it could be many other things. But I just can't shake this feeling something isn't right x
That is reassuring at least with the eye scan that problems aren’t obvious. I think you need to ask who is going to take responsibility for your diagnosis and potential loss of eyesight should it happen or at the very least why they think it isn’t a risk beyond all doubt. A steroid trial perhaps? It was on the basis of a an excellent response to Pred that I got a diagnosis because other than symptoms my tests were negative. Do you take any other medications?
That's what I want to ask my GP tomorrow. If they can give me steroids for a few weeks, if the pain gose away I was right and if it dosent they were right. When I worked in A and E many years ago, any body came in with symptoms of GCA, got blood taken then started on steroids right away. The steroids could be stopped if they were wrong, but doctors now seem to take more chances with people's sight, hearing and life, when I started nursing, doctors were scared of getting sued, they don't seem to care now x
Dear God you have hit a brick wall. Why can’t doctors think outside of the box? It is very rare but possible to develop GCA at a young age. Your symptoms are classic. I wish you could see someone who really understands these diseases. You are going to have to batter down the door to A&E until you get the attention you need. Whatever ails you needs immediate attention. Where in the country are you? We do have some Rheumatologists who are extremely clued up. I hope PMRPro/ DorsetLady/ Snazzy step in, what they don’t know is hardly worth knowing.
I'm in stirling up in Scotland. I'm hoping to phone my GP tomorrow and try and explain to them but I know they'll say rge eye consultant says it's not. My doctors aren't the most sympathetic x
He's wrong - there are cases in under 50s, even in under 40s and they are proven cases so maybe he needs to do a bit more reading. Unfortunately, you do have the problem that a lot of rheumies think the same about age and you will find it difficult to find one who will listen in terms of GCA being the diagnosis.
Where in the UK are you and is a private consultation a possibility for you? Even if it isn't GCA the symptoms you describe are due to something - and there are other things that could cause the same effects so somebody should be looking to rule them out or treat them.
Hi I'm in stirling on Scotland. I looked on to going private but there's no way I could afford it. I'm going to phone my GP tomorrow, I'm hoping they will listen to me x
This needs to be taken seriously - please impress upon GP you are concerned about your sight....and TBH you cannot put a price on that.
You are not too young for GCA , it might be rare in under 50s , but that doesn’t mean it never happens.
Thank you x
Just keep on at the Doctors I had to before they did recognise my GCA, like you pain killers didn’t work, they went for the easy option toothache or ear problems despite saying I didn’t have problems with my teeth or ears, the Doctors can’t go out of their way enough now to help me, I guess they feel guilty for not doing enough in the first place, I know only to well how difficult it was to sleep with so much pain, good luck I hope they manage they to sort it out soon for you.
Thank you x
Let me know how you get on, just don’t be afraid to keep pushing, mine was diagnosed in August 2018 I saw 7 doctors in 3 weeks and was in so much pain I wasn’t going to give up till I received an answer as to what it was. x
I'm going to phone my GP tomorrow, and try explain everything. The only one who listened and seemed to care was the optician I went to with my blurry eyes, she's the one who sent me straight out to the emergency Eye doctors. X
I’m amazed at how much the opticians know about the condition, an eye test I had a year ago was by a young chap who had worked in A & E and when I mentioned my GCA (thinking he wouldn’t have heard of it) he told me all the symptoms and also the side my symptoms started on I was amazed as he was 100% right. x
I saw that - so choosing another doctor isn't easy. Did you see an eye specialist or a rheumatologist - I assume from Forth Valley? I thought there was one good rheumy at Forth Valley - but who knows a year or so on!
Good luck with the GP. If they try the age bit we can provide you with some references to back our assertion you can have GCA at your age.
Yes it's NHS Forth alley. I saw the consultant ophthalmologist. I can't remember his name but when I worked in the hospital years ago it was a Dr wardrobe and Dr Ferguson, they were both nice. But all the staff has changed x
My daughter is back in the endoscopy department after a spell in Covid ICU there.
The symptoms you describe need to be shown to a rheumatologist because the alternatives would be more recognisable to them. Whatever it is, you have something and it needs investigating. Soon. Maybe remind the GP that if you were to lose any vision you would have no scruples in making a detailed complaint. And start a file with details of what happened, where and who said what ...
Will add my tuppence worth: please look in the mirror, check your forehead to see if the arteries near the temples are obvious/enlarging. I have GCA, was misdiagnosed and blind in one eye, only two days after seeing optometrist. All your symptoms were mine and never knew why my forehead arteries were bulging slightly. Listen to your body & do see a Rheumy or Opthamologist.
Hi my temples look fine, but my scalp and round about them are sore x I'm really scared to phone the doctor tomorrow but I know I need to x
Before my diagnosis of GCA I had severe headaches that didn’t respond to analgesics. My artery on the left was slightly raised but I didn’t have a very sensitive scalp. I was sent to A and E and like some others was given high dose steroids as a precaution. My inflammatory markers were high and I responded well to steroids. I agree with everyone who have replied so far, you do need to push to be listened to. It may not turn out to be GCA but you don’t want to take any chances with your vision.When you speak with your GP, remind him that there have been cases of GCA below the age of 50. Speak calmly but be firm. Thinking of you. Good luck with your consultation. Keep us updated on your progress.
Deep breath! You have to face this, we are all right behind you. Xx
If you get nowhere, call PMR GCA Scotland and ask them for help. It is the registered charity in Scotland, in fact they were the first in the UK. Tel No, email and website below.
They will know of the experts available.
03007775090
Secretary@PMRGCAScotland.com
HeyI am really sorry you are going through this. This is terrible and very lonely. You definitely call your GP and even the citizens advice bureau, even the Ombudsman if you can't find solution. Change your GP too if you must and try again.
Thank you x
keep harassing everyone until someone listens to you.My first bloodtests did not show anything for my PMR but my GP ran my bloods again and it showed I had PMR. So if they do 2 for PMR surely they need to for GCA. Go back to your GP.
Good luck-don't stop
Thank you x I'm not long off the phone to my GP who was really nice but said that the eye consultant had ruled out giant cell arteritis. She will write to him to say I'm still having problems and also write to the neurologist to try and move the MRI along quicker x
Please stick with it, despite how difficult it is until you get an answer. My mum also had classic symptoms but was turned away every time due to 'normal' blood results and it was eventually an optician who first mentioned GCA and sent her to another A&E, too late to save her sight unfortunately. As soon as she was on steroids all her other symptoms, the scalp, headache, jaw, shoulders etc improved.
hi lindabear,
With the very greatest respect to our beloved Monarch, if you were the Queen, Medics would not gamble with your sight by sending you home undiagnosed! They'd investigate, urgently. remember the doctor's oath, 'first, do no harm.' if you will pardon the pun, they cannot turn a blind eye and you certainly can't afford to. no answer, is not an answer, it's a wait and see tactic, and everyone on this forum will be fighting for you to be able to see at the end of this process. you are not alone, you have an army of experience by your side.
Well recorded evidence is a strong tool on this path, so please do begin a diary immediately with dates, symptoms, appointments, names, phone numbers, and the fact you have not been diagnosed, nor medicated. I feel deeply for you because my PMR was left undiagnosed for a year and a half under the sceptic maze that is Circle MSK, until I was literally crippled in agony and could not move. my pensioner hubby and I invested £250 of our savings, went private 28 august 2019, diagnosed with PMR, prescribed 20mg steroids, and literally skipping round our garden two days later. since then, thank goodness I found this forum.
you are just as precious as our Queen, can you imagine the press coverage and legal consequences if she went blind over night because of neglect! As corporal jones says, don't panic, you are well armed now to get through this. walking with you all the way, Polly.
Thank you x
another great tool is to use in your armoury of evidence is your mobile phone to record a video of your symptoms, particularly at your worst.
I've used this to show my Dr. a 2 am attack of a/fib, with arrhythmia, tachycardia, and bradycardia. Later at my doctor's surgery at 9.30 am I presented without a single symptom. BP normal ECG normal bloods normal, because the episode had passed, but he was shocked to see my oxi meter readings of bpm 167 high plummeting to 25 low, oxygen drifting to 89, and my heart /pulse doing the light fandango! so he referred me to cardiology for investigation, I'm still waiting. but at least it's being progressed.
good luck, don't forget, we're all coming with you, polly.
Hi Lindabear,just been reading your letter have to say my friend was the same as you had to call out Ambulance twice and twice she was miss diagnosed and nearly lost her sight everything ok now on road to recovery,so if your still in pain dont ignore it,I had blurred vision and sore jaw and was sent in to hospital over night because thy thought I'd had mini stroke but found I had GCA but was very mild no headache soif you know things aren't right dont be put off.Let us know how you get on, Take Care x
Thank you x I'm not long off the phone to my GP who was really nice but said that the eye consultant had ruled out giant cell arteritis. She will write to him to say I'm still having problems and also write to the neurologist to try and move the MRI along quicker x
It isn't an eye specialist or neurologist you need - it's a rheumatologist ...
Hi, I have been where you are, I was suffering really bad jaw pain that then radiated down into my throat that was making it impossible to eat, along with the headaches, really tender scalp. I initially spoke to a doctor at my surgery that completely dismissed me telling me it was a sore throat, even though I explained it only happened when I chewed food, she then proceeded to basically say it was all caused by the painkillers I took for my bad back, that was one thing I didn’t actually have as I take the painkillers for CRPS, when I looked at my notes from this phonecall she hadn’t mentioned anything I’d talked about. After this I felt I was left with nowhere to go but felt there was something really wrong. Just by chance I got something else wrong with me and this time I managed to make an appointment with my favourite doctor and that was the best thing I ever did as she took me seriously. Do you have a doctor who you can talk to and will listen to what you have to say, if so please contact and explain everything you are experiencing. Really hope you find someone to help.
That’s exactly how I felt and at the end of the day we know our bodies best and need to listen to what we’re feeling. Get an appointment and make a list of what is going on. Point blank ask them about GCA and PMR and tell them your concerns and just because it’s unlikely you may have it, doesn’t mean that it is definitely not it x
I had GCA at 29. You need to see the doctor. You need to get on prednisone. I had to be sent to an Internist because my GP thought the same thing. The internist immediately put me on prednisone, and told me that somehow I had something that only the elderly get. Luckily I didn’t go blind, but they kept a good watch on me for years.
I had “migraine”headaches for years after that, with tenderness, but no other problems. At 70, I developed PMR, and have been dealing with it now for 16 months. I did suddenly go blind in one eye at 55, but the retina specialist said it was due to a hole in my macula.
GCA can happen at a young age, but they told me it is very rare.
Thank you x
You have my sympathy, I had the same line trotted out to me for two years about being too young for GCA at 53. A lot of medical professionals are very rigid in their thinking however if you follow any debates between them they will argue one another into the ground about differences over minutiae. My retort to more than one ( usually Ophthalmologists) when told I was too young was "There is always a first". I now finally have a diagnosis of GCA after having to get myself to the Eye Hospital during a relapse and was then referred through to a Rheumatologist by Ophthalmology. After patiently listening to my history (including a very heavy genetic loading on my Fathers side for Rheumatic conditions, Grandmother blind and crippled, her Sister my Great Aunt in a wheelchair, her Son my Uncle in a wheelchair, i have suffered from Psoriasis since 25/Gout since 32, all auto immune Rhemotological conditions) they came down heavily on the GCA diagnosis as all the symptoms of my first relapse including strange pain in the scalp, a bit like sunburn, pointed to it. All they seemed to keep banging on about at A+E was if I was having headaches. Well I couldn't describe what was happening as that, it was pressure, an intense feeling of pressure like my head was bursting. They are so concrete, the computer says no. You must persevere, it is your sight not theirs. I wish you the best of luck.
Thank you x I'm going for an MRI sometime I never got a date, I'm hoping that can put an end to my uncertainty x
I just wrote a long response and it would not post. I will try to summarize. Swelling behind the eyes could be Idiopathic Intracranial Hypertension. When my eye doctor saw the swelling I was immediately sent for an MRI to rule out a brain tumor. I have 3 eye conditions and have been told to go to the ER if I have sudden changes in my vision. I wouldn’t leave without answers. A neuro ophthalmologist may also be able to help as they deal with headaches.
The ophthalmologist mentioned intercranial hypertension. He said affects woman who are of a larger size. He should of just said I was fat lol. My daughter has it, she got diagnosed at 14 with it. But she got sent to the hospital right away and had an MRI, CT scan and lumbar puncture that day. I got told not to worry about it, I'll not go blind and the neurologist will phone you x
Definitely contact you GP.
I did x she's getting back to the eye consultant to tell him my eyes are still sore my head too. And shes going to chase up neurology to see if they can hurry the MRI up x
Has the ophthalmologist ruled out Macular Degeneration? I had the same symptoms in my right eye. Blurry vision. Red colors are yellowish. Blues are faint. I couldn’t read an LED clock - the clock face went black. It turned out to be Macular Degeneration. I have PMR, and the ophthalmologist suggested strongly that I replace the Prednisone with Hydroxychloroquine.
Get a sheet of grid paper and and stare at it, one eye at a time. If any of the lines are not perfectly vertical and horizontal (waves and curves), go see a different ophthalmologist. Do not delay.
Hi Linda. I am so sorry you are in such distress and of course you are frightened. As one person advised be firm and don’t give them any reason to write you off as hysterical although you have every right to be!! In the US we can get angry and threaten to sue which may be the only benefit of not having National Health. I didn’t read all the replies but perhaps the eye doctor can refer to a neurologist. I don’t know if you have been diagnosed with PMR? Anyway there are other things that can impact your eyes like this and not be GCA PMR. I don’t want to alarm you further but to explain why a good neurologist needs to be involved would be to look for any other signs of MS and maybe move that MRI up sooner. You are in my thoughts and prayers.
I feel so much for what you are going through. It is sometimes much easier to take a stand on behalf of someone else, but you are as important and as valuable as anyone, and I do hope you will be able to be firm but calm until you have a proper diagnosis. As Winston Churchill said - never give up, never never give up. We will all be standing with you!
Checking in to see what your status is. Hopefully, you have been able to connect with a rheumatologist. All these gals have armed you with the knowledge to persist in getting a diagnosis. Hopefully, progress is yours. 💖
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