Doctors were baffled. I started using a wheelchair in 2006. And doctors wondered why. "Why are you in THAT?" my UK neurologist once said. I told him; "I can't walk". He hadn't seen me trying to get from the 30 bus in Holborn to the National Hospital for Neurology & Neurosurgery.
In 2009 I graduated PhD in a wheelchair!
I couldn't walk. and he was disbelieving and hurtful.
I was 'shaking', so Parkinson's was diagnosed (by two neurologists in London) but the weakness of walking was dismissed. My wheelchair seen as, probably, 'not needed'.
My walking 'truth' was ignored, was denied, was dismissed. Right up until and including 2017 when an Irish neurologist wrote to a new neurologist that he had seen no progression /deterioration of my disease in the 6 years he had me as his patient!
Interestingly others had! My physiotherapist had to write twice to plead that I get help. He witnessed my stumbling, near falls, I had had some serious falls, my inability to negotiate my house.
He wrote to my GP who dismissed it as he had seen my neurologists referral letter and chose to believe the neurologist. The physiotherapist wrote to my new neurologist. I had to insist my GP write to my new neurologist also, on the threat of me going to a solicitor if he didn't and I fell and injured myself. He wrote.
Yet in the time the Irish neurologist was my consultant , two muscle biopsies (2012 & 2014 in London) had proven I had Muscle myopathy as well as Parkinsonism, dystonia and an energy disease (CPEX test).
His referral letter was the most devastating doctors letter I'd ever seen.
I was shocked, astounded, numb.
As I increasingly struggled to walk, my neurologist declared he'd seen 'no deterioration'. I, had tried to convey my 'deterioration' , in my last consultation I had said "everything is worse" - I was totally not heard. Which is finally when I realised I needed to leave him.
The pain of that denial of my reality rendered me a 'jelly' of depression, lacking confidence and disbelieving my own reality. I've had to battle emotionally, psychologically to hold on to my 'truth', my 'power', my 'knowledge'. I CANNOT WALK.
This neurologist ignored UK consultant specialists
He ignored skilled assessments
He disbelieved my reports of continual difficulties.
He even ignored the OBJECTIVE muscle biopsy which in fact proved I had
'Muscle Myopathy' a degeneration of muscles. a DISEASE of my muscles.
Seen under a microscope.
He made me feel as if I was going mad. Was making it up. Fabricating. Exaggerating He was telling me I had blond hair, just as I was telling him I had brown hair!
That's 'madness making'. Its insane making.
And everyone BELIEVES neurologists.
No-one believes the patient.
and who else knows he also ignored the objective tests done in the UK?
No matter how many 'reports' you have, tests results you have, opinions you have, if the lead consultant (or GP) has an 'idea' (particularly here in Ireland where misogyny of male consultants is especially pernicious) his, and only his, 'idea' holds sway. You as a woman, low on the scale of 'belief', are up a river without a canoe or a paddle!
I've laboured for over 20 years with a progressive neuro-muscular disease and my biggest enemy has been one male Irish neurologist in Dublin.
He was a neurologist from hell.
And I will say that. I will say my 'truth'. why should I keep it a 'secret'?
The additional suffering this neurologist caused has been on the scale of torture. Abuse. Neglect and totally unprofessional.
He devastated 6 years of my life.
Proof!
A film taken from you tube - similar to my test yesterday- I had a lot more wires and 'things' stuck on my legs.
I was examined, I was filmed walking. I was filmed walking with all sorts of wires and contraptions stuck to my legs, and wearing a jacket holding more wires and contraptions.
I've had a gait analysis once a year for the last three years. 2016, 2017, 2018. What did it prove? what has it proven?
"my disease is progressive".
"I've got worse"
"I am not mad"
I was shown all three videos from 2016-2018. I was shocked, appalled to see my deterioration. It was patently evident.
As the wonderful Dr C said; "we've demonstrated what we needed to demonstrate" .
Yes, we have...and NO Neurologist can dispute it. NONE!
I am unable to walk...period!
I am a wheelchair user and will be until I die.
Having my wheelchair adjusted to account for my dystonic inverted left leg and foot
No-one should endure what I've endured in Ireland since I returned here in 2010. Its been an utter medical nightmare.
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