Advice for son GCA testing.

[Pippah45]

I would love some help from you good people and its a bit complicated. Son is late 40s paralysed from the waist since he was 19. Further injury to his neck when pulling himself out of a hotel bath - the wall fell down! Neck pain has been considerable and anywhere he went he had to have a microwave so he could use a wheat bag multiple times a day. Yesterday he called me and asked about my progress and I mentioned the angst about every little thing with the eyes, dirty specs eyelashes etc. Conversation suddenly changed, it wasn't an easy mobile phone one. It seems his neck pain has morphed into eye disturbances. All I could think of was to tell him to get CRP and ESR done asap. He works extremely hard travelling all over the US where he lives and I have been hoping he wasn't heading for a crash. He actually mentioned the holiday word and it would be the first in five years. Any suggestions gratefully received thank you.

[SnazzyD]

What a worry for you and him. Has he been checked out since the bath incident? With a trauma history and neck pain I’d want him to be fully investigated with GCA as just one of a number of possibilities. From the way you describe his activities, he doesn’t sound like a person who knows how to slow down but I hope he gets this looked at ASAP to rule out structural damage and not just an inflammatory marker blood test.

[Pippah45 in reply to SnazzyD]

Thanks Snazzy indeed you are right he only slows down when a UTI or some such hits and he literally can't get out of bed! Yes he was checked out after the neck incident which was many years ago and in Mexico! But I will get onto him again. Having suffered neck pain myself I can sympathise that the change to slight eye disturbances is a relief but I hope I got the point across. He is very knowledgeable about his various conditions although I haven't agreed with what he has said about his neck in the past. I will get my brother onto his case too he may listen more attentively! Thank you.

[SnazzyD in reply to Pippah45]

Oh, I hadn’t realised the neck injury was so old. Even so, there may be chronic changes as a result, especially if he still has pain from it. Anyway, at the very least he needs to make sure that he isn’t suffering from any eye condition that could be detrimental to the eyes if left eg glaucoma. It probably all needs to be looked at afresh rather than blaming the usual suspects and something gets missed. It must be nerve wracking being on the sidelines trying to get him to stop soldiering on as he has learned to do since he was 19.

[PMRpro Ambassador]

I agree with Snazzy - the new symptoms need to be checked out as a new event and not blamed on any historical injuries. Eyes are precious - better to be at the eye specialist once too many as once too few.

[Blearyeyed]

I agree with the others . The new symptoms need checking out asap , even if it isn't GCA.

If he has other disability issues , and has had an accident if that sort it could easily be some form of Neurological inflammation of Damage that is causing these Eye disturbances as well.

He should get an MRI on the head and neck and spine area.

Even if he had one at the time if the injury , small changes in his movement or even repetitive activity day to day can have pushed something along that was not noticeable on previous scans and caused some sort of Nerve or Vascular impingement that wasn't there before , and would not necessarily show up in raised inflammatory markers.

So , get him to ask for x-rays , and a scan and have a eye check too .

I hope he slows down long enough to take your advice and just make sure he will be

" match fit " for his next Adventure.

Let us know how he gets on

[Pippah45]

Thanks everyone I am afraid I let go of angst about him round about the time he wanted to jump out of aircraft and crazy stunts like that post paralysis! But of course I think of him a lot just not the worrywort stuff much.

[SheffieldJane]

A lot of us have “ over work” and “ driving ourselves” in the lead up to PMR and GCA. I think your instincts are right about urging him to get checked out. I’d be pretty proud of him if he was my son and I can sense your pride when you talk of him. Just the personality type that needs to be urged to see a doctor though.

[Pippah45]

Thank you SJ. You are quite right I am immensely proud of him and the way he has handled the whole thing. E was in hospital for 15 months initially too. "Mum I am not going to get depressed because getting Unrepressed is so difficult". He suffered depression following a concussion aged 6! So had leant a valuable lesson.

My GCA followed losing my elder brother as did my sister's. So yes I will make sure he gets checked out. Thank you.