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 

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  • Posted

    I have no experience with this.

    But don't let the Dr brush this aside, Nobody should have to deal with what you are going through.

    Good luck and I hope you get answers soon

    • Posted

      Thanks back at gp.nxt week to tell him the topirimate made no difference x
  • Posted

    Sharon,

       I began having symptoms in early July, 2017, and it took about five weeks to diagnose me with GCA.  Although my double biopsy was negative on pathology findings, my rheumatologist still thinks I have it, so I am on 60 mg. Prednisone, which has completely alleviated all my symptoms, except for when I take walks; then I still get some pain in my lower legs, but I can deal with that.   

        Are you seeing a rheumatologist at all?   

    • Posted

      Hi no. Just neurology at moment..back at gp.nxt week to say the trial of yet another drug isn't making a jot of difference. Glad you got sorted..x

  • Posted

    My GP picked it on the first visit May this year.. I presented with all the symptoms of PMR to the point of being on a walker and extreme pain, frozen shoulders, the lot. I had mentioned " a headache that wouldn't go away" and he asked if I had noticed a dropping eyelid, or vision problems. I confirmed I had, he immedialty started me on 50mg prednisone even before any blood tests and I thank him to this day that he did, as had he not suspected GCA the dose of pred would have been much lower and I may have suffered GCA complications.  From there he gave me the referral for a rheumatologist to take over but I couldn't get in for 6 weeks. That's when I had a temporal biopsy but was advised that the results would probably be negative as I had been on such a high dose of pred for over 6 weeks at that stage. Biposy came back negative but that was what he expected (he just hoped there would be some sign of giant cells) , so it made no difference, he continues to treat me for GCA and PMR and I am only now reducing my dosage till we find a level that I can tolerate without any flare ups. Only down to 20 at this stage but I am patient. I am in no hurry, I want to be safe rather than sorry. I have since had a checkup with the GP and asked him why he didn't organise the biopsy himself and he said he didn't see the sense in putting me through it, he KNEW I had GCA as the only symptom I didn't have was the sore jaw. You will see by other comments on other topics that GCA should always be diagnosed clinically first, rather than rely on a biopsy. And my doctor is the same age as I am (62) and has been around for a long time. Not only that, he has Parkinsons and his 35 year old daughter has Lupus so he is well and truly knowledgeable with PMR and GCA as the are linked to the same family of autoimunne diseases.  

  • Posted

    No experience.. but this is awful! Keep pursuing and demanding help and attention!
    • Posted

      I totally agree with the others. My GP recommended this Forum and yours will probably know it. Perhaps you could tell your doctor that others have had similar symptoms and been helped with high dose Pred. Ask him to give you that to see if it works while they sort out the diagnosis. If he/she isn't helpful see another doctor in the practice. You should not be suffering like this. Hope you get some relief and soon. 

  • Posted

    I've already replied to you on the other post you put up on another thread.

    You need a competent doctor who isn't fixated on migraine and fibromyalgia. And knows that up to 20% of GCA patients present with blood markers that are in the normal range. A trial of even moderate dose pred would show if the "fibromyalgia" really is fibromyalgia as it doesn't respond at all to pred although a higher dose would be better if there is a chance of GCA. Have you had any visual symptoms? Is that what makes them think it is migraine? And how old are you?

    • Posted

      No visual symptoms..I'm 53. It might not be gca but it certainly isn't migraine x

  • Posted

    Severe headaches, jaw pain, tender scalp, visual auras I knew something was wrong. Blood test revealed CRP of 76. Doctor put me on prednisone immediately and sent me to a hospital clinic for an ultrasound. No stenosis detected. From there, more hospital tests were done - CT scan x-rays, eye tests. Tests and examinations by cardiac, neurology and rheumatology consultants. Temporal biopsy confirmed GCA. The whole process took a few weeks. Very thorough, and their management has been spot on. 
    • Posted

      Wish I had this in my case..as I said to other lady it might not be gca but surely they could give me a trial of prednisolone then they would know. Take care
    • Posted

      Pred is also used in some cases of migraine - just giving pred isn't the entire answer although it would probably be a good start here.

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