I'm being left in limbo

[mantonnicola]

I'm 69 year old male who was in good health or so I thought. I'm having many vague symptoms for 4 months now. Headaches mostly mild that come and go. A few per week. Usually appearing in early evening. OTC pain relievers usually stop them but they return eventually. Sometimes over temple sometimes back of head. I've had some visual disturbances-basically some blurryness that comes and goes too. Eye doctor found nothing. Some brain fogginess. Ears feel clogged sometimes. ENT said ears are normal. Occasional dizziness. Some mild shoulder stiffness . Also widespread burning sensation in legs and arms momentarily but then disappear. I'm having some mild tingling in the scalp and muscle twitches all over body when at rest but no limb or arm weeknesss. Bloodwork all normal across the board. CRP is less than 0.5 and ESR is 2 consistently. I've had bloodwork done every two weeks or so and nothing has changed. Brain MRI shows nothing. Some white spots but Neurologist says common as we age probably from migraines he says. Neck MRI shows some spondylosis and spurs but all mild. Carotid artery ultrasound was normal.

My concern is GCA because of headaches and visual disturbances. My Doctors will not help me even though the symptoms persist. They think it's my neck giving me these issues. The bloodwork is too normal as it doesn't budge or change they say.They are sending me off to physical therapy. They gave me Gapabentin which I haven't taken . I don't want to get dependent on them.

I'm having a merry go round of symptoms and anxiety is getting to me. I just feel off.

Should I trust my doctors?

Thank you for any intelligent responses I'm just looking for answers or possibilities of what could be going on.

[DorsetLady PMRGCAuk volunteer]

If does sound very GCA ish in many respects -except for no raised blood markers (but that’s not applicable to all), being more problematic in evenings rather than early mornings and the fact that OTC painkillers help -albeit that symptoms return. How soon?

In the last few weeks before diagnosis I was using OTC painkillers during the night as well as daytime (quite a juggling act to ensure I didn’t overdose).

Necks do cause a lot of head issues - and if nothing has been found on scans etc on head it’s difficult for us to say what it is.

You may have a better idea after physio -hope so.

[mantonnicola in reply to DorsetLady]

Thank-you fore responding. I guess it's not clear cut case .

[DorsetLady PMRGCAuk volunteer in reply to mantonnicola]

No, unfortunately it’s not always clear cut… do hope you get the right answers. Please let us know how physio goes, and any further information yiu may glean. Good luck

[PMRpro Ambassador]

The doctors are quite correct in saying that most of those symptoms could relate to tight or spasmed back/shoulder and neck muscles. Although much of it COULD point to GCA, it is all very vague and it isn't surprising they are looking elsewhere. I think you have to start with physio and see if there are tight muscles causing problems.

[mantonnicola in reply to PMRpro]

thanks