GCA not sure if I have it or not

[jls12]

I started feeling a heartbeat in my temple. It wasn't very often but also my temple would ache sometimes. I contacted Dr. They sent me to fast track rheumatologist. It took a bit before I was actually sent. My blood work was slightly elevated so they got concerned about that. I had a doppler ultrasound and a CTA which is CT scan of body and neck. Everything came out neg. I heard about so many false neg on biopsy I didn't want to go through with it. I have on and off temple ache and sometimes tender. It moves around then sometimes its gone. I have had a sore neck for a week or 2. Im nervous I could still have it. Its a constant stress everyday. The symptoms can be vague. I do clench my jaw alot. Im getting a night gaurd for my mouth for the clenching. I hate the worrying. Does this sound like it could be it? Does it come and go like this?

[SheffieldJane]

I wish I could help you, being in this anxiety state is really horrible, you have had so much to contend with lately. It certainly could be GCA. Then again your thorough testing is all coming back negative. My fear is the eyesight loss that can occur with GCA so I go to my Optician to have my eyes thoroughly checked every 6 months. Perhaps this would reassure you too.

[jls12 in reply to SheffieldJane]

Hi I actually had an exam today. Its so hard because the pain in temple is gone as of the past few hours. I did massage the area earlier for a few minutes but not sure that would help that much. The other morning the side of my head felt like it had been over worked. Almost like bruised

[SnazzyD]

Try this. I don’t know if you have GCA or not; it can be a bit vague in the early stages, but whether you have it or not, this is useful to know as sternokleidomastoid muscle tension can mimic some GCA symtoms. Stress and sitting work can really trigger it.

healthline.com/health/stern...

[jls12 in reply to SnazzyD]

Thank you. I'm going to read this and see if it matches up with my symptoms

[PMRpro Ambassador]

You could try the chewing gum test: chew gum at one chew per second for 2 to 3 minutes. If you develop jaw claudication (an aching jaw that goes away when you stop the chewing action) that is a strong indicator that it could be GCA, It isn't perfect - but worth a try.

[jls12 in reply to PMRpro]

Thank you! I did try the gum chewing test. It didn't bother me when chewing. Sometimes a slight ache briefly after chewing. The dr did ask if I could chew gum and also steak and chewy type of bread. I noticed on an occasion I could be chewing and sometimes ill get a bit of an ache but never long lasting it super painful.

[SnazzyD in reply to jls12]

My jaw pain was never super painful, just that the muscles ran out of steam when used. It was like a jaw version of when one’s thighs start to tire and ache when one is trying to take too many flights of stairs. It was a generalised ache around as opposed to a pain coming directly from within the hinge joint like I’ve had with TMJ issues.

[jls12 in reply to SnazzyD]

Did you have any other symptoms? How did you get diagnosed?

[SnazzyD in reply to jls12]

I was diagnosed on the basis of my symptoms and rapid response to 60mg Pred. All my tests were negative. My vague symptoms suddenly let rip over 48 hours. The main ones on the day were scalp burning, jaw claudication and feeling I was on another planet. My eyesight was failing in A&E as a late symptom.

Prior to this I had morning pain in the base of my skull, sweats, dry cough intermittently croaky voice, my pillow felt hard, my glasses were annoying on my head, suddenly forgetting what I was saying, black spots in my vision if I exercised, greyed out vision occasionally in my right eye at night, small vein over my right eyebrow, hearing dullness and tinnitus in my right ear, neck ache, increasing motion sickness in the car, getting stiff on long journeys.

I’ve had much more tenderness in the temple with sternokleidomastoid tension than with GCA. Others have slightly different experiences.

Do get your jaw looked at by a dentist too.

[Zebedee44]

Hi, if it is any comfort to you, I have reported jaw ache and temple pain throughout my seven years with PMR and it has caused me a lot of stress worrying about the onset of GCA. My rheumatologist referred me to Maxillofacial who observed that I open my mouth to one side when speaking and gave me simple exercises to do. I also had a mouth guard made by my dentist but I have found that I grind even harder on the rubber which I feel cannot be good for my jaw muscles

Evidently the jaw should not click when I open my mouth but it does unless I open my mouth straight down. Do you find yours clicks? Look at yourself in a mirror and see if you open your mouth to one side, maybe that is the cause of your jaw pain.