how long did it take people to get diagnosed with temporal arteritis
Posted , 11 users are following.
Hi all, hope you are having a relatively pain free day.. well i started with a severe left sided headache on 12th february, and every day since, it feels like it is tender starting from above the temple then in a line towards the back of my head, its like a bruised feeling, then it will be throbbing/pulsating. then i will get a tingling to the left on top of head. ive had it every single day, all these months later. five weeks ago it started on the right. its got so bad some days i am in bed the whole day. today its been bad, leading me to come on here, it stops for a couple minutes and then starts 'throbbing' again. ive seen neurologist, had mri, that only found high signal foci in the white matter ?? an incidental finding. he has given me about four different meds. finishing with topiramate? and is treating as a prolonged migraine.. all these months later he is saying it might not be..i've cried to my gp, and asked for a second opinion. he said lets try the topiramate first. other symptoms that have come on since february, are a strange squeezing under my armpits, mainly left, left eye flickering, left side of lip flickering sometimes, pins and needles in left arm, then the throbbing/crawling feeling starts again. other symptoms are i feel like im getting a cold then next day i feel fine. when i walk sometimes i feel like i am 'being pressed down' its so weird.
as a side from this, i have been having squeezing pains all over for years, was told i had
fibromyalgia. but all the above things with my head/armpits are totally different. as anyone had similar symptoms? how long did it take you to get diagnosed. X
1 like, 23 replies
Reeceregan sharon90860
Posted
Yes, I'm one of the lucky ones as far as having a knowledgable GP goes but this forum has also been a saviour for me. They say forewarned is forearmed and in my case I now have learnt so much about PMR and GCA and how to manage them correctly from all the advice on here that I am no longer frightened of what's ahead. Without the help and support from so many sources I may have been stuck in negative land because I'm an energiser bunny at the best of times and couldn't cope with being so debilitated. On 50mg pred....well...you can imagine. Burn and bust was my pattern until someone described pacing, and more important, listen to your body. It sunk in. Best advice ever but I got that from here, not the drs.
sandy08116 Reeceregan
Posted
sharon90860 Reeceregan
Posted
sharon90860
Posted
the symptom of pain in my arm pit has been fobbed off as muscle pain
i am now getting like a grinding pain in my left shoulder and left hip bone, and am currently doing a pain dairy to take back to gp and ask for a second opinion !
teresa75456 sharon90860
Posted
Hi, Yesterday my primary care doctor to tell me the result of a blood test. I was a little nervous. She said it was an autoimmune disorder. Temperal Arteritis. I had never heard of it. All I know my head had been hurting for weeks. I had gone through this before years ago but the difference now is I hurt in my legs. The tingling you discribed I do have that as well as the sensation in my arm pit. I was prescribed Prednisone which I am not happy about. I plan to go pick it up today. I don't know a lot about it yet. But plan to continue my research.
EileenH teresa75456
Posted
If your doctor thinks you have temporal arteritis, more accurately known as giant cell arteritis, then you really do need to take enough pred to manage the symptoms as your sight would be at risk otherwise. However - no primary care doctor is really competent to manage GCA and you must be sent to a rheumatologist asap.
This is a very old thread - if you post a new thread more people will see it and reply to you.
teresa75456 EileenH
Posted
I understand what you are saying. The doctor just told me the blood result yesterday. She will not be managing the disorder. She has me scheduled to see someone on Tuesday morning. I am confident she will refer me to what ever specialist that is best. I am just struggling with fearful thoughts. I started the Prednisone today.
Anhaga teresa75456
Posted
It's natural to feel nervous about taking prednisone as it is quite a serious medicine. But it does work wonders for a number of disorders, including saving eyesight if someone has severe inflammation affecting the optic nerve - one of the manifestations of giant cell arteritis (temporal arteritis). If you stick with this and the other useful forums (like HealthUnlocked) you will get lots of pointers on how to manage not just the disease but also the medication.