Wondering if you can have artery pain more near the top side of head with GCA?

[misaryk]

Hi everyone, hope you are all doing as good as can be. I have been wondering I have the tenderness coming back on my scalp. It is more though near were my side part and a little near the temple. Should I be concerned? It wasn't present yesterday, but has come back today.

[SheffieldJane]

I think you are doing all you can by having tests and consulting medics. I recognise the fear of GCA in you because I share it. The idea of going suddenly blind is terrifying. I think PMRpro advised in an earlier post that there is usually about a weeks notice of worrying symptoms. Every headache, sore eye and jaw twinge seems sinister and yet symptoms like that happen most days. I had a horrible cap- like headache yesterday that I made worse by tensing against it. It went with 2 paracetamol, this suggests to me that it was nothing to do with PMR and was just er a "headache". I wonder if mindfulness or quiet meditation would help to keep or fears in proportion and not allow them to become life limiting? All illnesses have a psychological component and I have noticed fear, irritability, and over sensitivity in myself with this condition. It is no life to cower in a corner analysing every odd pain and it's me I'm advising really. mysaryk X

[misaryk in reply to SheffieldJane]

Hi and thanks for responding, I guess why I am having so much doubts if I am being handled correctly rift now by the doctors is my optometrist first sent a resort to my GP saying I need to get this checked out immediately. So my GP office calls my 2 days later and says I need to come in that say it is urgent. I do and they put me on the 50 mg prednisone. Then I get immediately referred to an optimologist who exams me and then wants me to go to the ey clinic asap to have an arterial biopsy. Only when I get there I am treated like I am crazy and what am I doing here. My ESR is normal and I am 50 so it can't be that it is most likely your fibro and you can also just stop taking the prednisone I don't think that is necessary. Which I had been on already for 12 days. And read you can't just stop cold turkey it could cause possible cardiac problems. I was suppose to have a biopsy and was prepared for that but I was the last patient of the day on Friday, and I am guessing he just didn't feel like staying till close to 6:00 pm. He was condescending the whole time. I just confused 3?different doctors thought I warranted a biopsy and then this pompous one basically is keeping me in limbo, because I am not 60 or 70 and blood test aren't text book? Sorry I just get mad because this happened to me at 34 when I had cervical cancer . Went every year for pap, one year normal, next year oh you need a radical hysterectomy. This cancer is very slow growing and there is no way in one year it should have gotten to stage 2 cancer. Was told some people slip through the cracks.sorry for the rant.

[SheffieldJane in reply to misaryk]

Yes I do see, you feel like there is no one you can trust with this and you have to be on the alert all the time yourself. Your massive let down over the cancer diagnosis has compounded all of this. Maybe you could print off the posts you put on here and take them to your doctor, they are very clear and form a kind of dated diary of symptoms. So it's back you go, all determined, armed with notes. Good luck misryk. It will be me howling next week.x

[PMRpro Ambassador]

The scalp tenderness in GCA is due to another artery being affected and is one more piece of the jigsaw.

I'd go back to the first doctor - and tell them the entire story. To dismiss you as the one doctor has done is very unprofessional - he's criticising the clinical judgement of the others and anyway, he's wrong. Being only 50 and normal ESR aren't reasons for denying GCA.

[Sheila39]

My scalp this morning is so sore and throbbing,I'm down to 2.1/2mg...my hair has started to fall out massively ,( no bald patches yet).

I'm tolerating it ,hopeing that it's just my nerves that are shot at the moment .shoulder pain eases about 11am.

I also have Periformis Syndrome ,now that's a deep pain,it puts me off my feet at about 4pm every day,I just have to lie down wherever I am!? Embarrassing in B&Q.

[DorsetLady PMRGCAuk volunteer]

Hi misaryk,

As PMRPro says there are many arteries in the head that can be affected, so it's difficult to say what will or won't be - for example my temporal artery was never enlarged nor painful, but my scalp and jaw were!

I think you said in previous post you have appointment on 18th with Rheumy, so go prepared to that with a few notes of what pains you've had etc. If possible take someone with you who can listen on your behalf, it's difficult to take all the info in sometimes, and who can confirm, if necessary, what you've been through. Keep your notes brief but accurate so you get the info across to the Rheumy in the time allocated.

I think you maybe worrying unnecessarily as suggested by SheffieldJane, but that's very understandable when you keep getting different symptoms and are not really sure what is going on.

What I would say to both of you, it is highly unlikely you will go blind overnight - you are both on medication and you will have more visual symptoms prior to that occurring, and most importantly you are aware of what could happen, and will not let it happen.

Yes some people slip through the crack - I know, it happened to me, but I was not on medication, had never heard of GCA and was completely ignorant of the illness and its symptoms. I won't say a case in a million, because unfortunately it's not, but it's a rarity. So monitor your symptoms, but don't get paranoid about every little ache and pain.

Take care, and good luck on 18th.

[lindyloy]

Hi misaryk, I know how you feel, I have GCA and am on 20gms. pred. I had sight problems a few weeks ago just before I saw the Rheum. flashing lights and sun spots, there was a lady with me from a research project they are doing at Leeds teaching Hospitals into this disease I somehow felt better cause she was in there, the Rheum. examined me thoroughly and said I was o.k. and I haven't had any problems since. Every symptom is worrying and you tend to look for every little thing, (well I do).

[piglette]

As Dorset Lady says, you are probably in a good position in that you are taking pred which is the mainstay of stopping blindness with GCA and also you actually know about GCA, so you are forewarned and forearmed! I do sympathise with what you having to go through with the medics though.

[misaryk]

Thank you everyone for listening to me. Sorry for ranting I am just worried this is going to be another process of waiting years to get an answer like I did for my diagnoses of fibro. It was so frustrating, some doctors suggesting it was in my head not referring me to a Rheumy until last year. With the cancer I had a lot of signs the year my test was normal but they we poo pooed because the test said it was all good. Anyways thanks again everyone. 😊

[PMRpro Ambassador in reply to misaryk]

Never apologise for a rant - the people here know where you are coming from and if anyone can't cope they don't have to read. But you feel better for letting off steam - and someone will have been there and lend a sympathetic ear. And make a sensible suggestion as well probably.

But you have a history - which makes you even more sensitive to an insensitive doctor because you KNOW from personal experiencethey can get it wrong.

[misaryk in reply to PMRpro]

Thank you😊