A swab would be the easiest way, of course, I don’t understand why they’re not doing that? I was going to suggest seeing a nurse otherwise, the nurses at our medical centre are far more helpful than the GPs, but it sounds like yours isn’t? Would medical insurance cover you an A&E or GP visit while you’re in France otherwise to get swabbed? At least if you could find out the bacteria causing the repeat infections you could get a specific antibiotic & that might sort it longer term…I feel for you with the bad stomach on top of this, sending you a hug, not much of a holiday 
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I shall keep praying for a medical breakthrough for you @Mcwelly. This is certainly the toughest of times for you. I hope you’re able to enjoy your time in France to the greatest degree possible w/ your symptoms being what they are. Perhaps just getting away will help you have some recovery.
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Good morning @Isaiah_40_31 and all.
Quick update: headed off to France feeling more and more ill. Headaches so bad I couldn’t function annd I was seeing black patches in my vision, like tarmac lifting up from the road! and ended seeing a gp there. He thought I might have GCA and started me on 40 mgs prednisone for 10 days. We came home after a week as it was impossible to holiday. GP took me seriously, immediately referred to rheumatologist and steroids decreased to 35 mgs. Rheumatologist thought “unlikely” - remember that word as it features in nearly every consultation I seem to get - that I have GCA and has me weaning off of the steroids with the proviso to go to AE if I get symptoms of stroke, continuing spikes of hypertension and eye haemorrhages (I had shown her the BP readings and pics of my sub conjunctival haemorrhages which happen spontaneously. She did say tests were not specific for GCA. Anyway, I do feel better! Night sweats have stopped and a lot of the pain. The occipital pain and pulling has not benefitted from steroids however.
Meanwhile, await another sialogram re recurring cheek swelling and infections.
MRI showed inflammation high up in c spine with rest of c spine degenerative changes. What is the difference? I’ve had no appt for this and nothing reported back to me.
So the unlikelies: unlikely to be related, unlikely to be this that or the other. I am back on PPIs as still have reflux and this GORD a culprit for throat and voice symptoms but does not explain everything.
Next step - c spine rabbit hole I guess?
Happy weekend all xx
I’m so sorry that you had to abandon your holiday, & still haven’t got any proper answers, but good that the steroids have helped you. I don’t know much about GCA, but it sounds as if there are diagnostic tests they can do to confirm it according to the NHS website- ultrasound and biopsy - did they do anything like that? If it is GCA, then it makes sense that it’s improved with steroids…hopefully you won’t get those symptoms again, but if you do then maybe push for a definitive answer rather than an unlikely?
Temporal arteritis - NHS (www.nhs.uk)
It’s crazy that they can report on inflammation high in the C spine but then leave you hanging with no plan for diagnosis or treatment! Hopefully the steroids will settle that down too…I really feel for you with how badly you’ve been let down by the UK medical profession, sending you hugs & praying you’ll get some answers
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Thank you @ Jules, I know people try their best etc but the dots just don’t add up! I had USS but not biopsy so will see what happens when I stop steroids completely. Funny enough I get some slight relief using an anti inflammatory throat spray along with topical Otomise ear spray. This is usually for otitis externa which I don’t have but the steroid and/or neomycin have soothed.
Xx
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@Mcwelly - The fact that the various anti-inflammatory medications you’re using help calm your symptoms clearly points to inflammation as being the cause, but what is causing the inflammation/irritation to your nerves & vascular tissues? I hope that someone you see for medical help will be curious enough to want to seek out the cause & not just treat out the symptoms! Push for that if you can.
I do hope the relief from the oral steroids is prolonged. It’s sad you felt so terrible you couldn’t finish your wonderful trip to France.
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