I mentioned to my Eye Doctor that I have had some issues with waking up in the night and in the dark and not being able to see out of my right eye. I made the mistake of mentioning it again on my next visit. He took a SED rate and one was high and one was low. He wants me to have a Biopsy for Temporal Arteritis. I went to my GP and we went over everything, such as, I actually have no other symptoms of Temporal Arteritis. No fatigue, weight loss, headaches, nothing. Doctors don't tell you what you should do, you have to make that decision on your own. Surgeons the same way. They say, this may be something you may have. I have had a high SED rate, which has come down over the years, for 20 years. I have no clue what to do. I don't want someone cutting into my head cutting out a piece of my artery because maybe I have something or not. Those of you that have this, did you know something was just night right, right off or was it more subtle than that?
Yes I am from the U.S. no we do not have a discussion board here, we are all too busy running off to the surgeons and the pharmacist to see where others are in their lives with this. I have asked my friends, my family and they are...no don't do it...or yes do it...it's 50/50...so I am now more curious if I have this, shouldn't I feel a lot worse than I do than just having a dark spot in the night. I have been sleeping with a night light (at 65) to see if I can catch the black spot in the light...has not happened. I would appreciate any opinions or suggestions.
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SoHereWeAre
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It’s a tricky one isn’t it? For a year before my GCA became obvious I was waking in the night half asleep to go to the bathroom and often noted in my half conscious state that my right eye couldn’t see anything, just grey. I think it was after sleeping on that side. By morning I had forgotten about it until I started to join the dots after diagnosis that I remembered. No, things weren’t right but not enough to put it down to more than being a tired and stressed.
I had the biopsy 8 days after starting Pred because my symptoms demanded it. Would I do it if I had that time again? I’m not sure. To have had a positive result it would have meant that it was really worth the total disruption of my busy life due to Pred. However, it was negative (a number do give false negatives) but they had to treat it as GCA or risk me going blind. I didn’t have enough time to source the specialist ultrasound either. No I don’t like the fact that my head has been cut and bits taken out; it doesn’t feel the same there.
Your situation is made more difficult by the fact you have no other symptoms but rarely some people do just go blind with it with no other warning. The raised SED rate is not specific but adds weight to it. It might be worth going for it simply because there are no other symptoms, however, the question has to be asked of the eye doc, what is the plan if it is negative because it might be falsely negative? How will you be monitored if they don’t give you steroids just in case?
That is a tough call SoHereWeAre. Even if you have a temporal biopsy they won’t be able to give you the all clear and only a definitive diagnosis if they happen to hit the right spot. On the other hand people have lost their sight irretrievably with no warning symptoms at all. Has no one mentioned ultra sound at all?
It’s odd that you have no jaw claudication or head pain and only this night blindness in one eye. It needs to be sorted out though, something is amiss!
Have you had tests for other conditions?
If your doctors suspect that you have GCA then they should be treating you with high dose Prednisone, to be on the safe side. Hopefully people who have had or have GCA will come forward and share their experiences with you. Good luck, whatever you decide.
I am not even sure I had night blindness. I have bad sinus problems and (this is gross sorry) goop will drain from my tear ducts and get into my eyes. I sleep on my left side and when I wake up it seems my right eye is not seeing, but I blink a bit and it comes right back. I have never gotten up and tried to walk to the bathroom and found my right eye was grey or my sight was not clear. After seeing the test results for my SED rate the Doctor just starting rattling off symptoms...do you have jaw pain, do you have headaches at your temples, you tired all the time? I have jaw pain because I am teeth grinder. I don't have jaw pain when I eat. I don't have headaches and at 65, I never nap, still work full time and find it difficult to go to bed before 11. I don't really exercise ( I should). All of my test results were good and have been. Blood glucose perfect, blood pressure perfect, cholesterol perfect, Doctor said A plus across the board. However I am a big person and you would look at me and think...yeah you are a heart attack waiting to happen...but I appear to have hit the genetic lottery. I do suffer from anxiety attacks and PTSD, but I have had that since I was in my 20's...I can tell when I am having an anxious moment apposed to...hey you are getting sick... The U.S. Healthcare system is really quick to send people for a slew of testing, surgery and pills. The Doctor prescribed 20mg of Prednisone 4 times a day, that just did not seem like fun on any level.
I see the surgeon tomorrow. I am wondering if I should see a Rheumatologist first.
This won’t be helping your anxiety levels one bit!
It sounds like an ear, nose and throat doctor might be of more help but having raised the spectre of GCA I suppose a Rheumatologist would be the one to say no it isn’t GCA.
Well done for working on through, it can’t be easy.
Hi again, we’re not doctors but in the light of what you’ve said (sinus, goop, quick clearing of eye) it sounds as SJ suggested that you need ENT as well. The raised SED rate could easily be due to chronic sinus infection. Have you never had this treated/investigated? If you are put on steroids at high doses for GCA I’d be worried about your immune system being suppressed with that infection going on untreated. Did the eye doc know about the goop and of so, what made them go down the GCA route first?
It is a tough call. I lost sight in my left eye off and on. My eye Doctor sent me to a surgeon and I did have Giant Cell. I also had terrible symptoms from PMR so it was a 'no brainer' for me, 60mg of Prednisone. It is a hard decision to make but if you get other symptoms move fast.
Severe head,jaw,ear & tooth ache were my main symptoms. Prescribed painkillers didn't touch it. Pred. relieved it within hours. Had one incident of double vision when out walking. Hope that helps. ATB
It does, because I have none of those symptoms. Not to knock the for profit American Healthcare system, but sometimes I think they are quick to push pills and do surgeries before just taking some time to look a little deeper or do a wait and see if any other systems come up.
When I agreed to a temporal artery biopsy I was in a state of shock having been diagnosed with PMR one day & then possible GCA the next. ( I had gone to the dr expecting antibiotics for my self diagnosed sinus). I had spent all of the interim day on the net ( unfortunately I hadn't found this site at that time), & had found that for the temporal artery biopsy there are 20% false negatives. I questioned the Rheumotologist about why one would have the biopsy, as if you have GCA symptoms they need to treat you for it anyway. He told me that they get other information from the biopsy that may be useful later on, though at that time I didn't think of asking what they get & still don't know. My results were negative, & I have to say that I would now ask more questions about the worth of the biopsy results before having this invasive test. Others may disagree with me.
If there is a suspicion of GCA you need to be treated for it regardless of the biopsy results.
To jump straight to wanting to do a TAB (temporal artery biopsy) seems strange when all you have is a high sed rate and such vague symptoms. Not least because having a negative TAB does NOT mean it isn't GCA, it means they didn't find what they were looking for.
Have they not considered MRI or other imaging which has dragged the investigation of large vessel vasculitis into the 21st century? This may be helpful to your doctor:
You mention your sinus problems and "goop" which isn't typical of GCA - but it CAN be typical of other forms of vasculitis including very early presentation of what used to be called Wegeners.
I think you need to get vasculitis experts involved here - it may be wider ranging than the eye specialist thinks.
As others have said, probably something else going on which requires further investigation.
For me, I was undiagnosed for some 18 months with all the usual fatigue, pains etc. Sight was lost in right eye over over a period of 4 days, starting with a blurring at bottom of eye travelling up to fully cover. No other visual disturbances previously.
There was another lady on here, from Canada I think, who had no other symptoms than sight loss, so GCA doesn’t always follow the rules.
Just out of interest has your eye doctor ( Opthalmologist?) looked at the back of your eyes to see if there is any narrowing or effect on the arteries at the back of the eye?
My eyes were fine, he did not see anything. He was doing additional laser surgery to clear up some film that had built up behind my Toric IOL lenses. I have permanented implanted lenses in both my eyes. He saw nothing, except the film build up. It all began when I told him I would wake up once in a while with my right eye not focusing as quickly as my left (my right eye is my predominately bad one) and once or twice I thought it appeared like I was blind for at least a count of 10 or enough time to think, wow that's odd. But since sleeping with a light on in the room and when I feel that sensation I look at the light and it is right there clear. Everything was fine until he checked my SED rate and that freaked him out. Yet, my GP told me yesterday that my SED rate was lower than it had been for the last 20 years. I do not have high blood sugar, my cholesterol went from 183 to 167 in a two year period, my blood pressure is a normal 110/60 and I have not so much in the last 5 years taken an aspirin or anything else for a headache, because I don't get them. Sitting here typing this I have no pain in my body, except for the constant ringing I have had in my ears since I was a kid. I have sinus problems. I have TMJ because I grind my teeth so badly that the Dentist is just working her way around capping all the cracked ones (I can't sleep with a nightguard it is weird). I think after reading your responses I am going to see the surgeon tell him that, "Look I think I want to do more of a work up on this with a specialist because right now I am not feeling the GCA." From what I have been reading it sounds like if I had it I would know it because many of you are in a lot of pain, with a lot of symptoms and my Temples do not hurt to touch, I have no jaw problems, neck problems, fever, sometimes I have night sweats, but dang I am a 65 year old woman. Any dizziness I have ever had I could contribute back to having sinus problems. It's fall in Seattle there is a lot of crap out there right now as soon as the rains come I usually feel better sinus wise.
I am definitely panicked about this because I am babbling like a mad woman.
Panicked you may be - but there is nothing there that suggests GCA/PMR at all so I really have to repeat - why straight into a TAB? A high sed rate isn't specific to GCA and yours has been high for years.
I am surprised they want to do biopsy based on your symptoms. Have they prescribed steroids, usually first thing before a biopsy. The biopsy tends be a diagnostic tool.
One thing you mention is the black spot in your vision. Does it move and is it only visible at night. As we get older the jelly that gives the eye it’s shape tends to shrink and pull away from the retina. This can cause “floaters” in your vision they are just small parts of retinal pigment not usually serious unless they become numerous or like a shower. Then it could be a retinal detachment. One other explanation of a black spot is macula degeneration. There are two types one dry and is usually a slow process, the other is wet macula and can be quite serious and needs urgent assessment. Both are age related. It could also be a blockage in one of the veins in your eye.
I can’t say what you should do but if he hasn’t prescribed steroids the standard treatment for temporal arteritisI would be wary. I used to be an ophthalmic nurse. I would urge you to get another opinion. Try an optician to have a good look at the back of your eye if they see anything they will refer you. Hope this helps xx
The dark eye is only there...in the dark...nothing during the day. I have floaters. They lasered some floaters out the other day. They did give me steroids. I refused to take them until I know more. Unlike most Americans (stereotyping perhaps, but I've seen my friends pill hauls) I don't take a drug just because the doctor says take this pill. When I take anti-biotics I make sure I actually need them. Steroids are scary to me. I don't need the weight gain, the hair loss and I am already dealing with ...I'm pretty sure I could grow a beard if I took take off work for three weeks...stage of life. Also, I don't like emotional roller coasters and crying because I'm watching a Hallmark Commercial...or a beer commercial with a horse in it...I see a Surgeon in about an hour...we're going to talk. I think I need to see another doctor before I jump this shark.
Hi, You're symptoms don't seem typical of GCA and I would think long and hard about having a TAB, they get such differing reviews - I have GCA and had a negative TAB but did have a positive Ultra Sound. Your eye problems need ongoing investigation definitely and can only wish you all the best. You might know something by now, think you've seen your surgeon...
The surgeon listened to me, said he is a doctor, but a surgeon, I was sent to him by my eye doctor with a concern of T.A. because of night blindness and a high SED rate, he said I could take some time to think about it, but asked me why I would since the possible outcome could be blindness, sometimes instant. I brought up the question about the 25% negative results, he said he would be taking enough of T.A. that it would not be missed.
If they would stop mentioning the instant blindness I could just think about this and take some time to see if more symptoms develop...but they keep hammering that blindness issue, because "I don't want to sugarcoat this for you".
Anyway, I am having the surgery this Friday at 1:30 pm. I will let those of you who are interested know how it goes.
Thank you for all your support and yes there is a big part of me that thinks I am making a mistake.
"but asked me why I would since the possible outcome could be blindness, sometimes instant."
Then ask HIM what his recommendation will be if the TAB is negative. Because that DOES NOT mean that it isn't GCA, it means they didn't find the signs and there are many reasons for that including skip lesions and it not affecting the temporal artery to mention just two. IF he thinks it is GCA then he should be recommending pred at an appropriate dose whatever - not suggesting a biopsy that will not give a 100% accurate answer and be making him money in the meantime. Call me cynical...
I am back. I had the surgery. The test results came back yesterday. As most of you probably would have guessed from my symptoms they were Negative. I asked the Doctor about the possibility of it being wrong. He said highly unlikely. I asked if this was possibly something I should not have done, he said he could not make that call; but at least I know now. I have to go next week to the vascular center to get an ultra-sound of my neck. Before the operation I was in no pain. Now I can't put on my glasses and I am sweating bullets at night. If this is what you all with TA live with on a day to day basis as far as symptoms are concerned you have all my sympathy and then some. Just thought I would report back since I tied up this thread for about a week.
I was told my my rheumatoligist that I had Giant cell after 6 weeks since going to my GP with pain in my head etc., I was also diagnosed with PMA he said he would not recommend a biopsy as that needs to be done very early in relation to the desease it actually was more than six weeks prob 8, now I think about it, I was relived as I also did not like the thought of it being done, but I was very ignorant of these conditions at the time, I know for sure I have GCA now, but if you have s choice it can only be your decision so good luck I'm sure the more knowledgable members of the forum will guide you.
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