Results!!

[Shaz029]

A brief summery; burning, pressure type head pain in temple there 24/7 no respite right side, back, shoulder and neck pain - bloods clear.

Deterioration of vision sent to eye hospital slight jaw pain - bloods clear.

Swollen temple, no pulse, sore head, jaw uncomfortable when chewing, constant continued 24/7 head burn/ pressure, when lifting or holding arms up they burn till I drop them. Visit to neurological more bloods - all clear!!!!!

So, he is now sending me for head X Ray. I feel like how many more symptoms do I need? Some people don't have raised levels? Just worried!! I don't want temporal arteritis, but I don't want to go blind either!!! 😩

Views would be appreciated 👍

[houndmum]

Hi Shaz029,

Can't advise, not experienced enough, only sympathise and add you are not alone, I too have clear bloods, headpain etc. AND been told today that clear bloods are sooo rare!!!! I did have the good fortune to encounter one doc with the b.... to diagnose my PMR and trial me on pred on CLINICAL apraisal, something most of the rest of the medical profession are not prepared to use. Doesn't help that the tests they are using are suspect it would seem. Did these professionals waste the whole of their time at medical school. They are determined not to prescribe more pred but willing to prescribe opiads to kill the pain. Fully expecting them to suggest anti depressants next.

Sorry I'm not happy either. I wish you the very best of luck and keep at em!!!

[polkadotcom]

Shaz029, in the 15 or so years since all this began I have never ever had raised inflammation markers due to either PMR or GCA. I had problems with diagnosis early on until I was finally referred to a rheumatologist who took one look at me and knew instantly what was wrong on clinical signs alone. About 20% of patients with PMR never do have raised inflammation markers.

I don't know where you are (UK?) but I think your GP is playing silly wotsits with your sight and needs to update his knowledge. A one-week trial of steroids will not have any long term effect at all and may just push him into diagnosing and not messing about. I think you should go back to him and stamp your feet/shout/burst into tears - preferably all three.

And don't run away with the idea that you will still be on these boards in 15 years time either. I've had other problems along the way which have confused several issues, but the one great thing is that I am here!

[PMRpro Ambassador]

Ditto everything polkadotcom said.

Where are you? Not your address, the nearest town will do.

But you DO need a competent doctor who has some clinical skills - because the ones you have seen so far don't have any.

[Shaz029]

I'm in the Midlands. This has been going on now since June! No one wants a condition but when you've got so many symptoms why don't they listen!! At the beginning of the year after huge trauma in my life I was diagnosed with anxiety and depression and I'm sure they think I'm just anxious - I'm beginning to think this myself after so much non belief!!!

About 5 weeks ago I went to A &E the head pain was so bad, after a 3 hour wait and explaining all the symptoms he asked me what I would like him to do and what I felt I had because I had obviously googled the symptoms before I came - I burst into tears and walked out. I work full time pay my taxes etc and get treated like an idiot!!! 😔

[Shaz029]

The person I saw was a Nurologist from sandwell hospital who rushed my bloods through yesterday as he was very concerned I had temperal arteritis. He took my mobile and promised to ring the same day - he didn't. I had to chase the results this afternoon by his secretary and it was she who called me back. So where does this leave me!!! 😢

[Runrig01]

Unfortunately this story mirrors mine in so many ways. I already had a pmr diagnosis, when 18 month later GCA symptoms started appearing. I seen 3 local Rheumys over 18 months who all dismissed my concerns purely on age (47 at this point), and normal bloods.

I work as a nurse in the NHS and still found this a hard battle to fight. I had to eventually ask my GP refer me to one of the countries top experts. My local Rheumy then referred me to the professor who writes the guidelines for Drs to follow. Upshot is 2 experts said I have GCA, local Rheumy still refuses to accept the 2 opinions, so dropped local Rheumy and now have one of the experts overseeing my care. I think if you are atypical re age and bloods, you need to ask to be seen by a specialist with an interest in PMR/ GCA . I wish you the best of luck, if you need any advice on seeking opinions 😃

[Maxine-59]

My story so mirrors runrig01 Ishtar down to having been a nurse! Dismissed by one Rhematologist, Medical Team , Neurology , ophthalmology and finally after asking for a second opinion from a different Rheumatolgist I was diagnosed atypical GCA Which affected my temporal artery and my axillary and brachial arteries. I presented with severe head pain and fainting. A duplex scan confirmed it but I had been sent away several times with migraine. Are you in touch with Vasculitis UK - they have excellent advice and a helpline.

Best wishes

Maxine

[rosalinda]

I had all the symptoms of GCA the worst being the jaw pain. I had been on pred for some years for pmg. I even checked the jaw pain with my dentist who dismissed it and nobody seemed concerned (except me). I then lost vision in one eye for a few seconds twice, urgent GP appointment and he put me on a high dose of aspirin as he thought I might have had a stroke! He made me an urgent appointment for Monday morning (this was a Friday) with the stroke clinic. I explained my symptoms to the consultant and he said "what do you think this is?" I said GCA? His nurse took a blood sample which was rushed through and within half an hour I was with the eye clinic who put me on 60mg pred (up from my usual dose for polymyalgia). Within in hour all symptoms had gone. Later biopsy confirmed GCA. I was pleased to meet the stroke consultant a month or so later by chance and was able to thank him for saving my sight!

[Shazo29]

I really don't want this condition but it's the one that highlights all my symptoms- I wish they would try me in meds for a week just to see if the pains go away. 😞

[Polywotsit PMRGCAuk team member]

Below I have copied and pasted from the British Society of Rheumatologists guidelines on GCA. You can download the full guidelines from the PMRGCAuk website resources section (second page). Seems to me you are ticking a lot of the boxes, and here there is no categorical statement that bloods have to be showing raised values - it's just one of the signs.

Abrupt-onset headache (usually unilateral in the temporal area and occasionally diffuse or bilateral). . Scalp pain (diffuse or localized), difficulty in combing hair. . Jaw and tongue claudication. . Visual symptoms (amaurosis fugax, blurring and diplopia). . Systemic symptoms of fever, weight loss, loss of appetite, depression and tiredness. . Polymyalgic symptoms. . Limb claudication. . Fever, weight loss and other constitutional symptoms.

Examination may reveal . Abnormal superficial temporal artery; tender, thickened or beaded with reduced or absent pulsation.

. Scalp tenderness. . Transient or permanent reduction in visual acuity (partial or complete). . Visual field defect. . Relative afferent papillary defect on the swinging flashlight test. . Pale, swollen optic disc with haemorrhages on fundoscopy (anterior ischaemic optic neuritis). . Unilateral or bilateral central retinal artery occlusion. . Upper cranial nerve palsies. . Features of large-vessel GCA: asymmetry of pulses and blood pressure and bruits (usually of the upper limb).

Diagnosis and assessment of disease in GCA

The American College of Rheumatology (ACR) classification criteria for GCA [9]:

(i) Age at disease onset >50 years: development of symptoms or findings beginning at the age of >50 years.

(ii) New headache: new onset of or new type of localized pain in the head.

(iii) Temporal artery abnormality: temporal artery tenderness to palpation or decreased pulsation, unrelated to arteriosclerosis of cervical arteries.

(iv) Elevated ESR: ESR550mm/h by the Westergren method.

(v) Abnormal artery biopsy: biopsy specimen with artery showing vasculitis characterized by a predominance of mononuclear cell infiltration or granulomatous inflammation, usually with multinucleated giant cells.

For purposes of classification, a patient shall be said to have GCA (TA) if at least three of these five criteria are present. The presence of any three or more criteria yields a sensitivity of 93.5% and a specificity of 91.2%.

[Shazo29]

Thank you so much. This will be printed off and pushed under my consultants nose!!