Update after eye doctor

[Cobalt2sister]

well dr.said my Neuro ophthalmologist is the one who is most in know (GCA) but she was very concerned. See retina specialist this week she urged. ( he's out I see him 4/5); get a amaurosis ( blind spot) work up ; see rheumotologist...thinking retina TIA. They think not GCA but TIA possibly ( might we say who knows!!) I reported this to neurologist and she agrees retina specialist and TIA/ stroke workup. Rheumy if symptoms come back with tapering. ( I'm down to 60 now) I feel dizzy from it all...and difficult sorting when I only get 2 HR sleep a day.

Then I thought: oh no, if its not GCA does that mean I'm not part of this wonderful community any more??? That's sad.

Im contacting my stroke neurologist, seeing retina Dr and monitoring symptoms on taper. That's all I can do now. Thanks for your support.

[DorsetLady PMRGCAuk volunteer]

Sorry to hear you’re still a bit in limbo, so please let us know when you do get a definitive answer….and if it’s not GCA, then as you say goodbye to this forum, and good luck…..

[Cobalt2sister in reply to DorsetLady]

Well, mini update: neurologist decided she didn't want to wait til symptoms ( if) come back tapering but to see rheumatologist now. Slew of rheumies but chose by earliest appt: may 2 nd. Also received Drs notes she sent in on Sunday and she did NOT rule out GCA but looking at " negative biopsy GCA". My stroke neurologist seems to think not likely TIA because of my preventative treatment and good testing in aug. My treating neurologist reached out to him though ( no word yet) and is still considering MRI/MRA. Am on 60 for another week, than 40 pred. Stomach now not good but am on prilosec for it and only sleeping 2 hours a nite which is hard but all told doing well. Only had one brief breakthrough temporal headache then gone. I think I've been fairly lucky with everything mild. Because now I'm back on waiting on GCA diagnoses, I don't have to leave forum yet!( yay!). I've been reading tons of posts and my heart and support with you all daily. Love to all, cobalt2sister

[DorsetLady PMRGCAuk volunteer in reply to Cobalt2sister]

Okay -that makes more sense. Hopefully the sleep will improve when you reduce dose -and maybe don’t have the worry of being pushed from pillar to post. Just try and rest/sleep when you can during the day -and have have a look at this -

healthunlocked.com/pmrgcauk...

..and nice (well you know what I mean!) that you’re still with us…😊