Can anybody inform me if they have been diagnosed under around 50 and was your blood tests normal?

Eileen, your opinion please ? Do all GCA patients have raised arteries (that can be seen and felt) on the side of the face by the eyes?(my new doctors thoughts on the subject). If this were actually true, then diagnosing GCA would be simple. If you know of any links referring to this I would be interested to read them.

thanks for the links eillen, I might use some info with specialist I am seeing. I kind of dismissed GCA for a bit, but now after more tests and comparing symptoms I am back to maybe I have it. I had ultrasound done today of temporal areas to see if something pops up. I seen one rheumatologist all she did was take blood tests, and no examination of my temporary artery bulging out and swollen temple area, and all other lovely symptoms and dismissed it just on ESR and C level. I am seeing another one in a couple few weeks, but my neurologist whose preparing all kinds of tests meanwhile, I want her to do cerebral angiogram, have you ever heard someone getting diagnosed that way? You would think it would show restriction of blood flow and be almost full proof if it is or isn't, no?

No. Not at all. You can have GCA without it affecting the temporal artery at all, without headache or any other supposedly "typical" symptom. A study found that less than half of patients actually demonstrate any particular symptom.

I think it is time to flee this extremely ill-informed person (not what I called him first!!!!)

https://www.ncbi.nlm.nih.gov/pubmed/7259802

says "Sixty-seven (53%) had the PMR syndrome without any temporal symptoms, and 10 patients (8%) had a "silent" presentation with only general symptoms." i.e. 60% of patients DO NOT SHOW TEMPORAL SYMPTOMS.

This paper from Hayreh (a world expert in silent GCA)

http://webeye.ophth.uiowa.edu/eyeforum/article/GCA/

quotes signs of abnormal temporal artery in only 20% of the patients they looked at. In general Hayreh covers most things well - but is insistent that CRP is always raised in GCA even if ESR isn't but he isn't correct in that assertion.

Possibly - it is mentioned in these guidelines:

https://ard.bmj.com/content/77/5/636

but they say clearly in relation to Recommendation 9 that it has been superseded.

"Although conventional angiography has not been included formally as one of the key questions to guide the SLR, the task force felt it was necessary to make a statement. Conventional angiography has been the gold standard for several decades in the diagnosis of LVV, but it is very invasive and involves high resource use and a higher procedural risk as compared with other imaging modalities. Besides, it provides no information about wall morphology, although luminal changes are depicted with detail. The main indication for conventional angiography in LVV is currently as part of vascular interventions such as percutaneous transluminal balloon angioplasty or stenting."

It is certainly a very invasive technique with risks attached.

"My diagnosis was based solely on 'try prednisone, if it helps it will be PMR '. "

which is not strictly true - that is just another brick in the wall of diagnosis. Other things will respond to pred, especially higher doses.

Does your new doctor also resent being given references to work done by international experts in the field? Because that's what I get off the internet - as does my husband, also a renowned person in HIS field. Not to mention the presence of the charities on the web.

I have worked with teachers who resented parents having any input to their children's education and the doctors you describe are of the same ilk. What is it with them? Do they feel threatened by patients who take an interest in their health? Can they not see the difference between those who are trying to help themselves and those who are trawling the web looking for the latest wacky idea?

I have worked with teachers who resented parents having any input to their children's education and the doctors you describe are of the same ilk. What is it with them? Do they feel threatened by patients who take an interest in their health? Can they not see the difference between those who are trying to help themselves and those who are trawling the web looking for the latest wacky idea?

In the USA I wonder if it is the cash-register effect? They have to be thought as omniscient or the patient may look elsewhere. Which of course is exactly what we tell people to do when they come up against this level of ignorance.

OH

I wasn't expecting that response from you about Dr 1

I have always felt very lucky about my quick, no fuss diagnosis, knowing how long you and others have taken to get a diagnosis. I did read up on PMR and thought that I had a lot of the symptoms and I got pain relief within 24 hours. I seemed to fit in with what others on the forum were experiencing. I wasn't aware that there are other possibilities ,other than Lyme, which was quickly ruled out. I had never questioned that diagnosis. Hmmmm. But my bloods have always been perfect

I was expecting a response from you about doctor 2. Initially I thought this person would be a great help, but yesterday I was shocked by some statements made. I now know we are not going to be compatible, and the answer to your question is YES.

My health has been deteriorating even further this year, with new problems coming, and I must say going as well, all the time. This last month all my head/face/neck pains(that I had in the beginning) have returned and are horrible. I wanted to rule out GCA. Maybe I do just have a sinus infection or something simple but I got no help. GCA was ruled out immediately as my arteries weren't bulging ! If only diagnosis was so simple. I do want to print out some information about this and give to this person.

I will do another post about my head problems to see if anyone else suffers similar pain, as it is a worry.

I am still blundering around on this 'new' forum and I have never re found a comment you posted to me about Ehlers Danlos. I saw it quickly and wanted to go back and read it thoroughly, but I have never seen it again. Family history, and mine, sadly does indicate that I may have inherited it.

"If only diagnosis was so simple."

Yes - the trouble is either they try to make it too simple or too complex!!!! The overall impression of your symptoms plus response to pred DOES suggest it is a fairly reasonable assumption to accept PMR. Which often is as good as you get. But it doesn't mean it 100% is nor does it mean it will remain "just" PMR forever. One lady on the forums had a dx of PMR from a rheumy despite GCA-type symptoms, then Prof Dasgupta agreed with a couple of other doctors who all thought it was GCA - but he said it was too late for high dose pred, they would manage the symptoms. It seemed a strange comment, that's all they do anyway, but he also wouldn't allow her to stay at high enough a dose to be comfortable. So she went to see Prof Mackie in Leeds who does tend to think outside the box. And one day the lady mentioned night time back pain at a time earlier than you would expect PMR pain. It turned out that the right imaging showed she has ankylosing spondylitis - which often appears like PMR and CAN cause symptoms that resemble GCA, especially in jaw and tongue.

And the possibility of others forms of a/i disease must be increased of you have signs of ED - so some lateral thinking is called for. This current doctor doesn't even think straight! He may be right and it isn't GCA, but his justification is totally flawed.

She had already dropped several clangers before she made that very assertive diagnosis. I did not have an opportunity to answer but I will see her once more and discuss whether we 'have a future together'. I suspect she was having a worse day than me. Said Fecht (Silvers saying).

Oh no ! Scary first paragraph in site you sent. I have been having stabbing pains in eyes and worst broken blood vessel in eye. I have had broken blood vessels for years, but this one was flooded with blood. I did go into optometrist about it but they said it was fine. I have some reading to do. Thank you Eileen

What site I sent?

Usually bleeding into the white of the eye is harmless - and for us it tends to be due to the capillaries on the surface being more fragile because of pred. I've never had it despite 9+ years on pred and anticoagulants - husband got them all the time while he was on warfarin (no pred) but hasn't as much since being switched to rivaroxaban.

Ah - the ankylosing spondylitis page that automatically comes up when it is typed? Nothing to do with me and I'm fed up with this new addition to the site. I don't think it is at all helpful...

The red eye that that refers to is uveitis and it is different - and you have had it looked at so it isn't likely to be that!

I have been getting sharp stabbing pains in both eyes , dull headache similar to sinus but different, roaming throbbing pains all over scalp , aches all over head inner ear aching for awhile, next minute jaw aching, then all teeth aching. The throbbing pains and the aches just keep moving. Any ideas? It has improved today but it has been coming and going for about a month.

Have you spoken to your GP about it? Your rheumy sounds hopeless. Those aren't typical of PMR but could be GCA , though not typical - but could also be AS or some other form of vasculitis.

I think it does need investigating - did the optometrist examine the back of your eyes or just look at the white and assume it was a conjunctival haemorrhage?

Problems started just after I had my full annual check up/back of eyes etc at optometrist. My report was good. It was Dr who made those comments and no other possible diagnosis was given. I will get a second opinion, but wanted some idea if symptoms were typical of GCA or not. Thank you for the information. I will take copies with me. Ankylosing is a possibility. Possible misdiagnosis of fibromyalgia many years ago. All I want is some relief for a pleasanter life style if any help is available

AS can lead to similar symptoms as GCA - because the blood flow to the head and neck can be compromised because of neck problems. I do hope someone will take it seriously.

If you don't mind me asking what does AS stand which disease? I just came back from seeing an oral and oral & maxillofacial surgeon to rule out TMJ cause docs have been using that as an excuse. My tempor muscle being swollen huge on right side for no reason for over 2 months now with the artery or vein over temple bulging out somtimes. They wrote for me to get biospy for GCA, as I explained before I have alot of symptoms. Had angiogram done of head this morning as well. They are doing doing lumber puncture which I dont want next week, and had mri's on head, nothing pops up.

ankylosing spondylitis = AS

I am going to have further tests at Optometrist on Monday and they will look deeper. I am also going to change Doctors. I was taken by surprise last visit. Thanks again Eileen.

I do hope you can finally get a diagnosis and some help David. Will b thinking of you. Take care