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MSPs demand better neuromuscular care in Scotland
Muscle disease patients and MSPs campaigning for better healthcare in Scotland are publishing an investigation into specialist neuromuscular care and social care at the Scottish Parliament this evening.
Eilean Stewart gave evidence of her terrible diagnosis experiences to the Mackie Report. She is 20, has limb girdle muscular dystrophy and is from Glasgow. She said:
“It took nine years for me to be diagnosed with limb girdle muscular dystrophy, which was a hard time as I was growing up. I couldn’t even put a name to why I couldn’t climb stairs and do sports. It was a horrible diagnosis process. I was put on steroids when I shouldn’t have been which made me gain weight and led to bullying at school. That was a really hard time and psychologically really harmful. It didn’t make me stronger.”
Do you live in Scotland? What’s your experience of neuromuscular care?
Re: MSPs demand better neuromuscular care in ScotlandI live in Scotland, it took me 6 years to get a diagnosis of hypokalemic periodic paralysis. I was fobbed off with chronic fatigue syndrome, referred to psychiatrists etc. But I must admit, once I met the right neurologist, he was really excellent. He did all the appropriate tests straight away, including muscle biopsy, EMG and genetic testing. But since the diagnosis, the support I have been offered is practically nothing. I see my neuro once a year, I saw a physio and dietician once when first diagnosed and nothing since. I don’t see my GP because he knows nothing about it and has made it clear that he’s really not interested. So I just get on with things myself.
Re: MSPs demand better neuromuscular care in ScotlandClaire, you are not alone. I think the major stumbling block as far as medical personnel are concerned is that despite their best intentions and concerns, what they can prcctically do for neuro-muscular people is so slight, they cannot exactly operate to fix, or manage with therapies or observe medicine effects, that it does leave us feeling like we are resigned to “going it alone”.
I'm always the animal, my body's the cage
I blog about nothingness www.amgroves.com
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