Truncal ataxia or disequilibrium is an unrecognised cause of orthostatic intolerance in patients with myalgic encephalomyelitis (Miwa, 2017)

https://onlinelibrary.wiley.com/doi/abs/10.1111/ijcp.12967

https://twitter.com/user/status/1030551093875494912


https://twitter.com/user/status/1030551424197906432

 

https://twitter.com/user/status/1030552341508960256

 

Hmmmm........I only "pass" the Romberg test sometimes, it used to be every time but, probably oddly, as I've got weaker my ability to deal with short periods of loss of vision has improved.

Not sure if that's relevant to this thread now I've written it

 

Disequilibrium and/or ataxia a cause of OI...? Wouldn't "component" be more apt?

 

Another person whose result varied:
https://twitter.com/user/status/1030558794470703104


It is interesting if a test is not reliable, i.e. results vary with retesting.

 

Tandem Romberg is one of the neurological tests in the NIH Common Data Elements.
Another neurological test that patients sometimes pass and sometimes fail(same patient)is the Hoffman.

 

I do not pass the Romsberg test, what do you do if that is the case???

 

In one of the CDC papers by Bill Reeves and team, they said they excluded people from the diagnosis of CFS if they had a positive Romberg test. I haven't heard any one else doing it. It doesn't seem like a good idea.

 

Huh, the Romberg tests I had were always with opened eyes. I could have problems with closed eyes. How's it done correctly? How long is it done?

 

https://en.wikipedia.org/wiki/Romberg's_test

 

I can't believe how often doctors shit me!

 

I often stumble when I blink but, like others it varies in intensity. It does not happen when I hold onto something and I realised that I press my feet down hard when it is dark or I have to stand without touching anything, and that pressure prevents the stumble as it helps my body decide where it is.

I'm sure it is a problem with proprioception which makes sense with all the other nerve damage I have.

If doctors would ask us how we cope with things they would learn more about the illness. We are so damaged that we have had to find ways round things in a way that someone recently ill has not and we also put up with things that others would complain about because it is normal for us.

Some of the variation could be because PEM leaves us too ill to do the things that usually STOP the problem, rather than the problem just happening during PEM.

 

It's little simple everyday things that allow me to monitor such things, such as; it used to be mostly impossible for me to wash my face unless I was sat down in the bath, or I'd fall over when my eyes were shut, or be unable to correctly find the sink and smash a hand into a tap etc. coz my body wasn't positioned as I thought it was (my bathroom isn't big enough to fall over in but I'd fall/topple into the door, or the wall above the sink etc.)