"Lack of diagnosis is causing uncertainty"

About: Dr Gray's Hospital / Ear, Nose & Throat Dr Gray's Hospital / General Medicine

(as the patient),

I became ill some months ago with what started with an irregular heartbeat, chronic head and earache, stiff neck, sickness and vertigo, and loss of periods. I was bedded for 9 weeks. Blood tests showed a viral infection.

As a single mum staying in bed wasn’t easy and I spent most of my time on hands and knees crawling about. Trying to get an appointment with my gp seemed near impossible to me and having to wait 2 weeks before i could get appointment. So I was in and out of a and e several times. Labyrinthitis was mentioned and was told I’d be fine in a week then another week then another week and so on.

Finally I was referred to see ENT which took a further 4 weeks, unfortunately I collapsed before then with severe headpain and was taken to hospital where Menieres disease was mentioned. I had ct scan which was normal then i wasn’t looked at again or given no explanation. I went to ENT after I got home. They looked in the ears and migraine was mentioned and was told to try some of these tablets which didn’t agree with me. Other medication was tried which caused a bad reaction which sent me back to bed for days. Then neurology was mentioned and yup am still waiting for an appointment.

I’ve got debilitating headache 24 hours a day, sore ears, stiff neck and dizziness and lots and lots of tears, fear and uncertainty as to what’s wrong. I’ve been reduced to a recluse for 4 months as fear stops me going out in case I collapse again. When the pain gets so bad am hysterical, I just feel left like this and have no life.

It feels as if trying to get my gp is impossible and am near breaking point. I still don’t know what’s wrong.

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Responses

Response from Anne Marie Walsh, Clinical Quality Facilitator, Quality, Governance and Risk Unit, NHS Grampian

Thanks for taking the time to share your experience on Patient Opinion. I can see that you were having a distressing and frustrating time with your health and I'm sorry that it feels like you are not getting to the bottom of what is going on. Sometimes it can take time to arrive at a proper diagnosis but it must be worrying for you.

I hope in the time that it has been since you posted your concern that you have been successfully diagnosed and treated.

Can I also just apologise for the delay in responding to you, NHS Grampian is just starting to work with Patient Opinion to get feedback from patients.

We are keen to listen to the stories of patients and carers, and going forward, we plan to respond quickly to all stories we are alerted to from now on.

Thanks again for taking the time to share your experience.

Best wishes

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