temporal arteritis
Posted , 9 users are following.
Diagnosed with temporal arteritis by emergency GP saturday 7pm .Started on prednisalone. Advised to see Gp today. Gp said I had been misdiagnosed yet I have had all the classic symptoms. He took some blood samples but said I had an ordinary headache. I have been treated for Temporal arteritis about 3 years previously and I would not go with an ordinary headache . I didn't have a biopsy then because I recovered fairly quickly. I am confused. Any advice will be greatly appreciated.
Maureen Smith
2 likes, 13 replies
snapperblue maureen63465
Posted
It would help if you'd describe exactly what symptoms you had. Where was the headache, did it hurt more if you touched the area? What other "classic" symptoms do you mean?
What happened 3 years ago? Were you on prednisone and how long? I'm confused by your comment that you did not have a biopsy because you recovered so quickly- usually the biopsy is done at the very beginning.
Is this the same GP who treated you then?
I was in a similar position in January- one doctor saying it was TA, the other saying it was not. I was happy to take prednisone (60 mg) for a short time until the situation was clearer. Not treating possible TA is a high stakes gamble, but treating it unnecessarily is really bad too.
maureen63465 snapperblue
Posted
This time I felt more severe pain in the right temporal area very tender to touch and jaw pain and felt more ill. prior to this happening I had had a muzzy headachy feeling for a couple of days and my eyes were blurry and felt sore. I used more gel tears than normal to help ease this. On reflection I had illness problems in 2014 and recurring ear pain but on being examined there was nothing in my ear to see.
I know this wasn't a normal headache and I probably only have 1 or 2 migraines a year. I am 78 years and am intelligent enough to know the difference between normal and abnormal.
The emergency GP did say I should go to A &E if symptoms recur and I am to blame for not doing as he said. A&E is not the best place to be on a saturday afternoon when the pubs turn out and it is always a 4 hour wait.
I can't think of anything else at the moment but will let you know if I remember anything
snapperblue maureen63465
Posted
As you know, the pain on touching the temple is a classic sign. So is jaw pain, especially pain that comes on while using the muscle, like chewing. The description of "headache" in TA is often too vague to distinguish between a "significant" headache indicating TA and any other headache.
When I was unsure about whether I had TA (having been diagnosed a few weeks before with PMR), I had my doctors spell out exactly what symptoms to look for and what to do for each. Loss of vision, race to emergency care. Jaw pain, temple pain, scalp pain, double vision- call him right away, or go to emergency care.
You have two of these, and they are not random, everyday sorts of pain.
There has been a rash of cases on this forum recently in which someone is diagnosed with TA and the next doctor says “Nah” without giving any clear reason. How did he know it was an “ordinary” headache? (Maybe he is right about the headache, but the pain on touching and jaw pain have me alarmed!) The blood tests for inflammation may have been normal because you were already on prednisone.
TA is too dangerous to mess around coddling some doctor’s ego. (Tact is not my long suit!) Ask for a referral to a rheumatologist, go back to the ER, or find a new GP!
snapperblue maureen63465
Posted
I have a great, reasonable GP who listens and treats his patients with respect, but there are timew when I think he is the exception.
maureen63465 snapperblue
Posted
I have quite painful arthritic problems but I am a very optimistic person and always tend to look on the bright side because there are so many people worse off than me.I got an immediate eye appointment at Spec Savers this morning and they were very thorough. Thankfully the optic nerve and surrounding blood vessels were clear but she did say it was possibly due to the Prednisalone. She also commented that my left eye lid was slightly droopy which is a new thing.
It all seems to be a bit of a grey area for me and full of if's and but's but I am still taking the medication which can only be a good thing
EileenH maureen63465
Posted
If the pain gets worse or you have any visual symptoms bypass your really very unhelpful doctor and go to the hospital A&E department and ask for their advice, telling them exactly what has happened so far. Unfortunately even if they do a biopsy it is only positive in about half of cases so even that isn't certain and 1 in 5 patients don't have raised blood values.
I don't know where you are - but my paramedic daughter has just told me that Yorkshire ambulance service trains their staff what to look for in GCA as they may come across it and "it is a medical emergency". Like a stroke or heart attack. Shame they don't teach doctors the same.
elizabeth20640 EileenH
Posted
i went to hospital this morning they carried out full eye exam they said it Iwas a temporary loss of sight, cause eyes were fine .
rheumatoligist has up my pred from 60mg to 80mg, the result of biopsy showed inflammation, I still have symptoms headache,jaw pain, and temples inflamed and a it sore, just want to know how long should it take the 80mg to work? they have given me a letter for A and E in case, I just wish it would settle down as its so frightening thanks
EileenH elizabeth20640
Posted
I can imagine you were frightened - I would have been too! But there have been people who wait for days to see their GP after an episode like that.
It is difficult to say how long it will take to work, but at least they have increased the dose. Some people find relief very quickly, for others it can take days and for some it never really goes away. Have your symptoms improved at all? All any of us can say now is we hope it does improve now and be ready to head to A&E if anything gets worse.
All the very best.
elizabeth20640 EileenH
Posted
i am on asprin and were concerned about stroke, I'm having a scan of heart and neck and back on Friday for blood, feel like a walking time bomb at this stage, but Eileen thanks for getting back to me so quick, I really appreciate it you take care of yourself x
EileenH elizabeth20640
Posted
Onwards and upwards!
lodgerUK_NE maureen63465
Posted
GCA goes into remission and it is not cured only in remission, there is no cure at present. Your sight is too precious.
misdiagnose maureen63465
Posted
Can your GP give his reasoning as to why this is not a flare?
ESR and CRP are not diagnostic tests.
Doctors must listen to patients' symptoms and take them into account while making a diagnosis as they do in a huge number of other illnesses. To suggest a headache is dismissive when the consequences of poorly treated GCA are so very serious (it can result in stroke, heart attack, dementia, etc at huge cost to the NHS and at great inconvenience and distress to the patient and their community).
Put your previous diagnosis and your current symptoms in writing to whoever you see.
Many chemists offer free blood pressure checks and also diabetes tests. Visit your optometrist for an eye sight and hearing baseline and let your GP know you are doing this. These actions will put the fear of God into your health care providers!
misdiagnose maureen63465
Posted