Hi just joined today. A little about myself I'm 32 and have been having temporal headaches for 3-4 months now with jaw pain ear and neck pain. Constantly been back and forth to the doctors complaining at first they thought it was a infection of the ear canal and after 2 courses of antibiotics no relief. Doctor told me to go to my dentist who said my teeth are absolutely fine. I must also stress I have extreme exhaustion I must nap 2-3 hours a day or I cannot function. Low grade fever ands sweating at night.
So I had bloods done which showed I had a raised ESR OF 62 this locum doctor sent me home with a printout of temro-mandibular joint disorder and said I'm referring you maxio facial department. And said that I'm most likely clenching my teeth in my sleep, hence the pain. He also ordered another blood test 2 weeks later.
When I had the later blood test I got a call from the doctor to come in. When I went he told me my liver function were abnormal and also ESR had raised to 77. He suggested he thinks I have gsa but I'm too young to have it. He spoke to the rheamotologist and sent me home with 500mg of Naproxen. And ordered another blood test. Which I have had today. These professionals are not telling me what's going on. I'm depressed and confused.
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Nav1984
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Nav1984, I am sorry to hear how you've been struggling. It's frustrating to be in pain, try to do the right thing by going to the doctor only to find they don't have an answer. I'm recently diagnosed with GCA so I don't have the knowledge nor expertise to give advise, but I did want to offer support. Others will be along that are experts in this disease. In the meantime, please know that you'll find a lot of support here. Take gentle care!
Good news! You've stumbled on to a very knowledgeable group of people who will probably be more valuable to you than some of those doctors! Don't know where you are, but the Europeans will wake up soon and try to guide and inform you. Stay tuned and welcome....they are a wealth of knowledge about PMR/GCA. Hoping for answers for you!
Sorry to hear you're having problems getting a diagnosis. Head pains, sweating, fever and fatigue sound suspiciously like GCA, not too sure about the liver though. By the way are you getting any shoulder or upper arm stiffness or pain?
Your age is against the normal which is why GP is dubious. If it is GCA then nothing other than steroids will do anything for the pain, so if Naproxen helps that gives you one answer. If it doesn't help then when you get results of blood test and if they are still high why not suggest you try Pred for a short period - say a week to ten days and see if that helps. If it doesn't then you can stop it again, so long as you haven't been on it for more than 3 weeks.
Please let us know what diagnosis you finally get, whether it's GCA or not, it will help us to help others in future.
Thankyou all for taking the time out to reply to me. I am from West Yorkshire in the UK. As you all must know how the nhs works. It's taken 4 months months for me to get an appointment with my own GP. I was being sent back and forth to locum doctors. Who don't personally know me as well as my own GP does. I have a 8 month old baby and 4 older children school age. My house is a bombsite and we have been living on takeout. I cannot even fulfil my household duties.
Look at Vasculitis UK website for further information on GCA and Large Vessel Vasculitis- getting the correct treatment and referral is essential. Like this group there is also and active Facebook page.
It is possible to have GCA in your thirties (I see jinasc has sent you the link about that) and there is an almost identical condition called Takayashu's arteritis which DOES occur in younger patients, in fact the main differentiation is on the basis of age: one lady had Takayashu's on her diagnosis until just after her 50th birthday , when it had been changed to GCA!
Ring the number jinasc has given you asap - they are based in Newcastle and know all the relevant people in Yorkshire. You probably need to be referred to Leeds - I suspect that ISN'T where your rheumatology opinion came from?
No my rheumatologiy opinion came from Bradford. I have come to my gp armed with all the information let's see what he says today. To be honest he was all for the diagnosis it's when he spoke to the hospital. He sent me off with naproxen. Maybe me being so young and Pakistani put them off the diagnosis because I don't fit into the criteria.
Hmmm - I'm not 100% sure about Takayashu's but there are many doctors who still believe it only happens in young Asian women. That isn't true but it does happen in females in Pakistan:
are just 2 links - if you google takayashu's arteritis in Pakistani women you will get a load of papers about cases to show your doctor. For a very rare illness there's a LOT from Pakistan.
Takayashu's is rare - so you will need to be referred to a specialist and Bradford may not be good enough.
Do let us know how you get on. By the way - is your GP also Pakistani?
Agree - untreated ESR of this rate should be sending alarm bells. ( not wishing to worry you Nav) but you deserve and need a prompt, accurate diagnosis. Xx
Hi guys so I'm back from the doctors. He's stressed that he totally suspected GSA but because he spoke to the Rhemotologist at Bradford infirmary who completely refused to accept all my symptoms because I am of Pakistani descent and aged 32. He was sympathetic but didn't refer me. Instead he printed out my blood reports from yesterday blood test which funnily my ESR bloods vanished from the lab but the PCV was elevated. He told me to go armed with all the information I told him and go Leeds general infirmary. And tell them to do something and not leave without an answer.
I have had it for 3 and a half years and was misdiagnosed twice by two medics, one of them my husband. I had a typical profile but thankfully no eye problems but I would have died, had a stroke or gone blind. You have a very high ESR, double the maximum 30, headache, and intermittent claudication.
So you are a bit young, we are all different.
You don't mention they have tested your CRP, that's the protein level in your blood and needs doing. If that is high you need treatment now, as Dorset Lady says a few days of high dose steroids aren't doing any harm, if you take them and feel better you have your diagnosis
Just been seen by the staff nurse, who has laughed at me coming in to A&E. She said this is not an emergency and I will only be seen by the hospital GP. And that fact that if it was so serious my own GP would have done something about it, and referred me. This is the whole reason I have been suffering for so long. No one wants to know.
So sorry you are being pushed around like this it should not be happening. I don't have anything to add to what has been said but hope you get a proper answer very soon all good wishes. Just a thought could you take someone with you to help you fight your corner?
Hi Nav, I am so sorry you're being pushed from pillar to post. It sounds awful and will feel even worse as you don't feel well anyway. I can't add much which is different to the advice you've been given, only to say you will get a lot of support from this forum.....and if it does turn out to be GCA you will also learn a lot. I am twice your age but it was a locum who diagnosed me. He said he was going to try something and if it was going to work it would work quickly. He gave me 2 weeks of prednisolone 40mg a day. The very first morning I awoke with no headache!! And so started my "journey". That was 2 1/2 years ago. Good luck to you.
By the way....if you have any eye problems at all that IS an emergency and a perfect reason to go to A&E!!!
Sound like classic symptoms and the fact you are having to fight your corner on your own. Is there anyone who can help with the children or housework. I know how debilitating ex the fatigue can be. You must keep pestering the medics until someone listens too you'd
Yes you are very young to have this condition but that doesn't mean you haven't got it once you find a qualified person to listen to you that in itself will help.
Whatever it is - you have signs of autoimmune disease and it probably developed post-partum. Time for someone to take it seriously since that is a recognised problem.
You poor thing, this is intolerable. You have expert advice and should now be able to contact the right person. As a retired very senior nurse I am disgusted by your treatment, or lack of it. That A&E so called nurse should be reported when you feel better. Don't worry about the house or the food, they will survive.
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my journey 
LONG TERM EAR ACHE
Flare up and ESR
Worry of Adrenal function
