Still not sure what got me

[missmylefteye]

Drs dont thinki have gca now. I still have left eye vision loss, & now some mild trouble in my right. Still no solid diagnosis after this suddenly happening 6weeks ago. I had a ctscan of my head last week, it said no signs of vascular inflammation. Can anyone tell me if that is a definitive test for gca? I did not have one obvious spot to biopsy. Also, my esr was normal, although, i have much arthritis & yet never have had an elevated esr. Not a lot of answers though i go to doctors all week long now. I am wondering about a tick disease that was not tested for... thx for all you guys help so far. I will check back in when i can, i cant use my right eye too much cuz it gets straned quickly. ☺

[Runrig01]

CT is not a definitive test, I have had biopsy, MRIs and MRA and all were clear. I then seen an expert who uses ultrasound where the halo they look for was found in the parietal portion of the temple artery. My bloods have always been fairly normal, however I was already on prednisolone when I developed GCA symptoms.

Are you under the care of a Rheumatologist, if not you need to be seen urgently, if this is GCA your right eye is at risk. Are you currently taking pred?

[missmylefteye in reply to Runrig01]

I just tapered to 30mg yesterday. Working on referral to rheumatologist. Rheumatologists here aviod anyone without indicative bloodwork. I called vascular docs last week in hope onecould help. I will look into that ultrasound. Thx.

[Hidden]

Hi,

This is a useful page on Vasculitis and the eye

vasculitis.org.uk/living-wi...

Have you had a flurocein angiography ( they inject dye into a vein and then scan the head, it's very useful for showing up damage to very small blood vessels )?

Have you seen an opthamologist? Have they ruled out a stroke as a cause of your vision problems?

[missmylefteye in reply to Hidden]

I've had two angiograms, one of my head, one of my neck. Neither showed amythin

[missmylefteye in reply to missmylefteye]

But the pulsating was getting really bad on 30pred. I felt shut in. Finally good pa put me back on 60pred & said vascular problem. Working down that route now with new neurologist. Rheumatologist totally blew me off cause my normal blood work

[PMRpro Ambassador]

NO! A CT scan isn't a definitive diagnosis of GCA - if it were they wouldn't be using the TAB.

If it is GCA you won't get the vision back I'm afraid and under the circumstances I would want to be on a very high dose of pred just in case - it is very common for the second eye to be at risk and there are no second chances in this game.

I'm sorry to be so blunt but they are putting your sight at risk which simply is unacceptable. I do hope it isn't GCA - but no-one can know and you need someone who will give you high dose pred.

Please do get someone to let us know how you get on, even if you can't manage the computer yourself.

[DorsetLady PMRGCAuk volunteer]

Hi mmle,

Having been there, I have to agree with PMRpro, you need to be on a high dose of Pred (in case it's GCA) whilst the doctors decide whether it actually is or not. You can quickly come off Pred if it's not GCA, you cannot replace your eyesight if it is.

[Maygal]

Not sure where you are based, but I have been following Lyme disease news lately and they are saying cases are drastically under-reported. I think the blood tests for it are expensive in most places though. I know they are in Australia. Good luck.

[missmylefteye in reply to Maygal]

Opthamalogist i have is really good, tested me for everything infectious, lyme came back negative, but im not convinced on either that test or gca being negative. Also, wondering about trigeminal neuritis, which i did have (branch) 4 years ago after some bad dental work. I am having major problems with all other specialists though, suddenly there seems to be a shortage of them here in CO.

[HeronNS]

Eye involvement is not common in lyme disease, although not unheard of.

chicago.medicine.uic.edu/cm...

I hope you've been seen by now and are on a preventative dose of pred while the doctors sort things out. I note from your earlier post that you had been on a fairly high pred dose and were now tapering. I believe the GCA experts will concur when I say that in some cases the initial high dose has to be raised even higher to be completely effective, although probably only for a short time. Certainly you shouldn't be reducing the pred until there's a definite diagnosis it's something else.

[Dorene]

If you have Temporal Artritis, which it sounds like, you should be seeing an eye specialist and having a biopsy, as heronNS is saying you need to be on preds just in case. Good luck.

[PMRpro Ambassador in reply to Dorene]

In the UK GCA is managed by rheumatologists, very rarely by an eye specialist.