Body 'shut down'

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nickybee
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Joined: Wed Aug 14, 2013 5:11 pm

by nickybee on Wed Aug 14, 2013 5:24 pm

Body 'shut down'

Hello - just wondered about the incidences of body 'shut down' in M.E sufferers. Our 17 year old son has had M.E since age 9. His has been a rocky road, with one period of total wellness when he wad 15, which lasted 12 weeks then total regression and severe symptoms.
He started having seizure-like episodes early in 2012, with whole-body convulsions etc, which have been diagnosed as 'neurological paroxysmal attacks' (non epileptic) Often now he gets times when his body just stops working - he's conscious, but unable to move, just mumble, then he loses concsiousness for up to half an hour with small twitches of fingers and toes, followed by slow regaining of awareness and physical movement. These episodes occur in clusters of maybe 3-4 a week then maybe a couple of weeks without any. Is this common with M.E?

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Dr Caroline Grayson
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by Dr Caroline Grayson on Thu Aug 15, 2013 12:20 am

Re: Body 'shut down'

From your post I am unsure whether your son is accessing any specific psychological support with his symptoms. I have certainly seen similar presentations in young people and in these cases I have sought psychological support..
Caroline Grayson
Dr Caroline Grayson
Consultant Paediatrician

arisonsned
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Joined: Thu Aug 15, 2013 4:04 pm

by arisonsned on Thu Aug 15, 2013 4:24 pm

Re: Body 'shut down'

Well this is a good illustration of why children and adults are dying from this illness...

Neuroimmune Alliance
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Joined: Thu Aug 15, 2013 7:10 pm

by Neuroimmune Alliance on Thu Aug 15, 2013 7:42 pm

Re: Body 'shut down'

Seizures and body locking are commonplace in SEVERE ME.

There is nothing psychological about them whatsoever.

When a virus migrates out of the blood and into the brain it can cause such symptoms.

I believe Dan Peterson and Ian Lipkin are doing spinal fluid studies.

You may find this article helpful

http://www.the-scientist.com/?articles. ... the-Brain/

Valentijn
Posts: 25
Joined: Fri Aug 16, 2013 10:16 am

by Valentijn on Fri Aug 16, 2013 2:28 pm

Re: Body 'shut down'

Dr Caroline Grayson wrote:From your post I am unsure whether your son is accessing any specific psychological support with his symptoms. I have certainly seen similar presentations in young people and in these cases I have sought psychological support..
I'm confused - how does psychological support help with convulsions and other physical symptoms in a biological disease? I suppose getting some reassurance and emotional support would be nice, but I'd think appropriate medical care would be a bigger priority.

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Dr Caroline Grayson
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by Dr Caroline Grayson on Fri Aug 16, 2013 10:35 pm

Re: Body 'shut down'

In this case of course it is important that there is support for the physical symptoms and I didn't mean to in any way to down play these, however for any young person who has had such longstanding physical symptoms of any kind I would anticipate joint working with my psychology colleagues in order to help with recovery
Caroline Grayson
Dr Caroline Grayson
Consultant Paediatrician

Valentijn
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Joined: Fri Aug 16, 2013 10:16 am

by Valentijn on Sat Aug 17, 2013 4:40 pm

Re: Body 'shut down'

Sorry, but I'm still confused. CFS/ME is classified as a neurological illness in the UK, and by WHO, and not as a psychological illness. So why does the answer recommend that the patient is referred to a psychologist, when experiencing seizures? Perhaps that answer would be appropriate for a psychological illness, but it doesn't seen helpful or appropriate for addressing the symptoms of a CFS/ME patient.

Could an answer please be supplied that addresses the neurological aspect of the illness?

Bluebottle
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Joined: Fri Aug 02, 2013 2:36 pm

by Bluebottle on Sun Aug 18, 2013 10:32 am

Re: Body 'shut down'

What tests could be ordered please that would reveal the physical cause of the child's seizures?

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