Advice please

[AngelRain]

Back in the summer of 2019 my scalp became very sore. So sore in fact that it hurt to do anything with my hair. Sometimes it even hurt to touch it.

I then had an incident where I had a sharp pain in my temple, which knocked me off my feet and left me with pins and needles in one side of my face a droopy mouth on that side and pain and tightness around the eye.

I saw the GP who put me straight on 50mg Pred and referred me to the hospital where I was diagnosed with GCA after ultrasound. CRP and ESR were low, but moved over time according to the dose of Pred. After diagnosis, Pred was immediately reduced to 40mg, then subsequently raised to 50 again, without affecting my symptoms. Six weeks later at my follow up appointment I was told I did not have GCA after all and I was referred to neurology and ophthalmology. I took a second opinion privately who said I did have GCA and had never had enough Pred.

This went on for another year. It took me 15 months to get off the Pred, with awful mental health issues throughout and eventually the neurologist, who I never saw face to face, diagnosed me with atypical trigeminal neuralgia and offered me Gabapentin, which I declined as the discomfort is mostly manageable. The Pred gave me a cataract, which ended with me losing the sight in one eye and needing two emergency surgeries. I also lost my job as a direct result of my illness.

I thought I had learnt to live with it all, but lately the soreness on my scalp has been horrendous. It hurts to even touch my scalp. I am exhausted and I have a permanent vague headache, nausea and dizziness. I've just put my symptoms into an online symptom checker - the one that doctors use - apparently, and it's come up with a red flag and GCA. I don't think I can do this all again.

[SheffieldJane]

what a horrendous experience AngelRain that has been completely mismanaged by your doctors. I understand your feelings about not feeling up to going through all this again, but it really should not have been like this. You are in fact still going through this and what you need is a secure diagnosis and competent treatment. You must seek treatment because you are putting the sight of your other eye in danger by doing nothing. This must be your priority. Are you in the U.K.? Where about? We may be able to recommend a good Rheumatologist. Perhaps a fresh post asking for recommendations. In the meantime your symptoms need emergency care in my view. Is there anyone ( friend/family) who can help you with this? It must be awful trying to manage this when you are so ill.

I also think that you have grounds for complaint and compensation but first lets get your symptoms under control and a decent doctor. I would want to go to Accident and Emergency in the meantime.

[DorsetLady PMRGCAuk volunteer]

Sorry to hear this -but you do need to get this checked out asap - whether it be GCA or not.

I can understand your opinion of Pred after the issue with the cataract -but as you know untreated GCA can itself lead to sight issues -and as you only have sight in one eye you cannot risk the other.

[Lenore58]

So sorry to read of how badly managed your case was by those treating you. Really hoping you find good care this time, are treated quickly and appropriately, and can eventually move beyond this.

[PMRpro Ambassador]

All been said - but this time you need a competent rheumy as an emergency referral, which may be easier said than done. But you are now risking total loss of vision if you don't.

[AngelRain]

Sorry, for clarity, cataract surgery restored my vision in the affected eye.

[DorsetLady PMRGCAuk volunteer in reply to AngelRain]

Well that puts a different slant on things.. but it still requires checking.

[Gimme]

I can understand you being wary of seeking medical help again after that horrible experience, but please do not delay. Your long term health and your eyesight may potentially be at risk and you have a right to receive the appropriate medical care. I know it is hard, but do look after yourself. I would go to A&E.