Because my cro never goes up (genetic thing) and sed only up when i have a high fever, docs refuse to discuss further all my symptoms of both PMR and GCA which tend to flare up around same time No matter how much i tell them about the studies showing a notable number of afflicted do not show these inflammatory markers, they dont want to pursue,
question concerns scalp symptoms. Is there a description anywhere of what these are like? Besides pain and tenderness, is it diffiluse? Patchy? Isolated? And if you touch your scalp, do you ever feel anything there especially in rrgions of max pain?
i have by the way scary visual disturbanxes no one knows what to do with. Maybe i will post on a vision forum? Id woukd be helpful too if those who have It can describe their visual symptoms especially if unusuwl. Thanks. Hope not too much work
finally, am going to rheum monday morning. If anyone gets thisin time, anything i should say?
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SkinNBones
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I dont see what to click on there. I tried the alphabetical category to look up scalp but just saw pages and pages of unrelated titles. If you have a link to one persons detailed post on what their and other scalp symptoms are like, that would be awesome. Ditto a post on peopes stories of unusual visual disturbances
Yes, please update. I have had visual disturbances along the way with diagnosed GCA but recently was informed that this type are concidered to be visual migranes instead! Rather than trying to describe this, I would point you to an internet search for "scintilating scotoma". If your search engine offers it, click on "images" or, even better, "videos"! Wishing you get a diagnosis!
Please describe your visual symptoms - that makes more sense than asking others what they had.
I had scalp symptoms early in PMR but they went away, but it felt as if my hair was lying the wrong way, and the scalp felt sort of burnt or scalded if I touched it. It hurt to brush my hair. Some people can't lie with their head on a pillow. Others say the sides of their spectacles hurt if they try to put them on.
hi. Thanks. Thats very helpful. And oddly, i thought i had described my visual symptom. . Maybe i did a separate vision post and then didn’t duplicate that here. Not sure Sorry about that.
One of them is that for a split second , everything gets completely black. Both eyes, vision just gone. I finally realized it was me and not a short in my reading lamp when it happened during day when no lights were on. Now its become more of a brown out than black out and tends to affect the top half of visual field and then its like vision returns before it gets to bottom half. Its both eyes
The other scary one is if i close one eye (either one) and fixate on a nything holding gaze still, within one ore 2 seconds everything fades to black. Its not all at once and the last to go black is tiniest circle around the spot of fixation. I know fading with fixation is normal but not after only 2 seconds. This seems to have gotten worse, sort of like the more I've tried, the faster vision goes away. The way i stumbled on this was i was looking at an amsler grid to test vision for unrelated things and starting just having the whole thing fade to black on me. There might be a reproducible order of fading, not sure
Those are the scariest. Also have a circle thats always there on awakening and during night or early am will sometimes wake upnseeing various things like a color checkerboard and lately something that looks like very rapid motion that appears so close to eye that i cant make out what it is is i. In general ivec seen visual hallucinations icalked Charles Bonrt hallucinations ir sone such?? Cant remember
I have looked up what visual issues occur in gca but alot of times they'll say transient visual loss but wont explain it. I have seen that Bonet thing can occur because of damage anywhere along visual pathway. I have also read where it says transient vision loss looks like a curtain coming before we die but it’s a metaphor that doesn’t help me very much. Would mine be considered a curtain? Not sure
Because its both eyes, was wondering about the bassalar or is that vestibulobasilar artery in the back of the head. For fading, theres not much in the literature There was one case study i no longer remember, just remembering i was not a happy camper when i read it
Scalp pain hard to describe but seems to occur within a few days. Of neck shoukder uoper arm, thigh, and hip pain and stiffness. Sometimes it burns , sometimes feels like someone is tugging at it, pulling hair away from scalp. Your description that feels like hair parted wrong way is very good. If i feel around, its some specific spote. that feel very sore to touch Its usually not on the sides though, Instead, usually top fairly close to a central part.
In my humble opinion - what you are describing COULD be what is called amaurosis fugax, fleeting loss of vision which can be due to a stroke so MUST be taken seriousy and investigate. Effectively, GCA is a stroke but targeting a very specific part of the brain, the visual centre. It needs taking seriously. And your description - yes, that is the curtain that is typical of GCA.
hi. Thanks much for the comment. If vision returns, i wonder then if that means transient ischemic attack (TIA) ie so called nini stroke, and i guess heralds a big paermanent one. One thing am not clear on is if it is amaurosis fugax, (a term thata rings a bell so perhaps i came across it early on when reading) whether that means not GCA or LVA or whether can be a symptom of those.
The neuroopthalmologisr i saw only wants me to go back to a glaucoma doctor because of an incidental finding which if related i think perhaps both caused by a temporary ischemia that is getting ignored I think he is passing the buck because he cannot see my vision lapses/ its not tangeable where as on the other hand, a thinning of the retinal nerve fiber layer he can point tonas objective.
I have had the symptom for four years now
I can try tonstart from beginning and try to find someone new. Its a long exhausting process. Tempted to write a rude letter to the neurooptho. Though likely will not be productive.
Yes, that is what I am saying - amaurosis fugax is a red flag symptom of GCA and MUST be investigated. It should be investigated as a potential sign of a TIA anyway but with other symptoms or in context it is GCA that should be thought of.
One of the descriptions of the visual symptoms in GCA is of a curtain coming across the field of vision but there is no single effect and I have heard all you describe mentioned by others in the past.
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