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Friday, 11 September 2015

Misdiagnosis

Hi!

It's been a while!
Foggy is resting up, getting some of his puppy fat back eating too many Wotsits, and is currently snoring quietly at Foggy HQ.
I am taking the advantage of insomnia (again) to write a blog. This blog has been brought about by a de-clutter of my inbox. I have been stunned by the amount of emails to friends which involve explaining why I have cancelled an event, describing doctors appointments and being told they 'hope I feel better soon'. I came across THIS email. It is the subject of this blog post.
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From: Sally Callow <Sally.Callow@.uk>
Date: Tue, Nov 29, 2011 at 2:52 PM
Subject: Re: Cooey
To: "Friend, A" <Friend, A@.uk>

Yeah, Visual Vertigo IS my dizziness. Basically you use your ears AND eyes for balance and for some reason my brain is only using my eyes which is why I get dizzy. Makes sense now, been misdiagnosed for 7 months :(  But I can do eye exercises now to fix it :)  Good times.
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I think it highlights a number of things I have previously discussed since the creation of Foggy.

1. Misdiagnosis

2. Length of time to get a diagnosis for every significant symptom

Let me set the scene, my M.E. symptoms started with a bout of Labyrinthitis (ear infection). For years afterwards I suffered with dizziness, lack of spatial awareness and balance issues. I had a lot of doctor appointments (GP, specialists) between M.E. diagnosis (2006) and this email (November 2011). It was 5 years from the start of feeling spinny to the Visual Vertigo diagnosis. At no point have I ever been told, by MY doctors, that the Visual Vertigo is a symptom of M.E. However, dizziness/disequilibrium/visual disturbances are known symptoms of M.E. Why was this not picked up on and explained? Blatantly obvious lack of healthcare professional understanding of M.E.
The exercises help, I still have to do them occasionally when symptoms flare up, but they will never 'fix' the problem. Apparently, the exercises help to retrain your brain and rectify the problem of internal miscommunication between brain, ears and eyes. Click the link for a more detailed explanation of the exercises:http://www.ncuh.nhs.uk/for-gps/clinical-information/cawthorne.pdf

Visual Vertigo is very disconcerting; it has caused me to lose balance thousands of times, sometimes causing me to fall down/up stairs, trip up curbs, bounce off walls etc. The day I was diagnosed, during a hospital appointment, was weird and enlightening. I took my mum with me as I was having issues with concentration and memory; I didn't want to misunderstand any advice received. So, we both went into the specialist's office. He put a contraption over my head which would allow him to watch my eyes as I marched on the spot in darkness (it was like a pair of goggles with night vision, allowing the doctor to see 'in' but I couldn't see 'out'). I believed I was marching on the spot, facing the same direction constantly. I was wrong!! My mum later told me that I did a 180 degree turn and was wobbling all over the place. The doctor explained that my eyes had been moving around frantically, trying to work out where I was, whether I was vertical and trying to stabilise. So, this is the doctor's appointment hinted at in the email. 

These symptoms would be difficult for anyone to contend with; a M.E. sufferer doesn't only have one illness/symptom to deal with. We have a number (20+ individual symptoms) to cope with, and adapt to, on a daily basis. It's a constant battle to try and establish what is wrong and why we feel like we do. EVERY DAY.

Love Sally x

1 comment:

  1. Fabulous awareness post... I have Fibromyalgis (and friends who have ME). Thank you for sharing your experience/knowledge :)

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