BBC World Service programme on senses - woman who lost balance when closed eyes, etc.

MeSci

MeSci

Senior Member (Voting Rights)
I thought this might interest some people - it does me, and the neurologist is called Guy Leschziner.

From today's programme, starting at about 1300 and finishing at about 1756, is an item on a patient (now sadly deceased) who, after treatment for cancer, developed problems balancing and co-ordinating her limbs. When she closed her eyes she fell over.

The doctor says that an antibody in her bloodstream has damaged her spinal cord.

Apparently a treatment helped with this, and works immediately (and energised her!). Might be worth trying to find out what this is - I don't have time right now.
 
I am intrigued to know what the treatment was for the loss of balance, so have sent the following message to him:

"Hi,

I am a long-term sufferer from myalgic encephalomyelitis, which in many cases includes problems with balance, including tendency to lose balance with eyes closed.

I was wondering what treatment was used for the patient who spoke on the programme who had this effect from her treatment for cancer?

Thank you in advance."

I sent it to him via this website: http://www.guyleschziner.com/
 
Reminds me of the Oliver Sacks chapter about a woman who suddenly loses proprioception.

"The Disembodied Lady", The Man Who Mistook His Wife for a Hat.
 
I have had this reply:

"I am afraid that the case highlighted is a very different condition from ME, with direct immune attack on the nerves and spinal cord related to lung cancer. The infusion mentioned is IVIG. To the best of my knowledge, there is no evidence of its utility in ME."

I have emailed further:

"I have posted the reply on this page:

https://www.s4me.info/threads/bbc-w...-who-lost-balance-when-closed-eyes-etc.16097/

and will wait for replies from doctors and other experts. Although I have an MSc in medical science, my ability to think is substantially impaired for much of the time nowadays.

I note that there are some messages on IVIG on this site, and many on the site I used previously:
https://forums.phoenixrising.me/search/352919/?q=ivig&c[title_only]=1&o=date"
 
I saw a documentary, Horizon I think, where a man had his proprioception nerves destroyed by a virus. He managed to walk by watching his feet but dropped when his eyes shut.

It fascinated me as I "tripped over my own feet" in the dark and would begin to fall when I blinked if I felt bad.

Now it doesn't happen so much as I automatically compensate by feeling the floor with my toes to fix my position. Of course this means I no longer have a positive Romberg test, sigh.
 
If I stand still and shut my eyes I will fall over. I'd be even worse (i.e. fall over more
quickly) if for some reason I tried to walk with my eyes closed.

The cause of my problem has been diagnosed - I've got Normal Pressure Hydrocephalus (which is a misnomer - pressure isn't always normal) and apparently there is MRI evidence of some kind to suggest I've had the problem all my life. I've had surgery to create another exit hole for my CSF, to reduce pressure in my head and it, initially, improved my balance enormously. I felt a lot more confident when I walked outside because I stopped staggering. Unfortunately it is well known that the operation I had can fail (the new drain hole blocks up), and sadly, I think that has happened to me. I haven't mentioned it to anyone yet because this problem occurred during the worst of the pandemic. And it took years for me to get treated in the first place.
 
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