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5509293 tn?1428531475

Sx, reporting them, and the Sneeze

Things have been fairly quiet for me, and that has given me a chance to think! Mostly nothing is happening right now. No more tingling in feet, left leg, especially. The one thing which comes up every now and again is what I call the sneeze. A while back I had full body jerks at night which would snap my legs and upper body together quite suddenly and waken me. Now after a period of quiet, I have a milder form of this, as if I've sneezed in my sleep and bent in two. A few times I've also awoken biting the tip of my tongue which is a little weird. Do you think this is just sleep jerks? It's so quiet for me right now that I think I might just be AOK : )

Got me to thinking that a lot of us give lists of sx to the neuros, and on this forum, and docs and folks reply, that MS doesn't work like that, that it can't be everywhere at once. However, perhaps we are all giving the wrong impression to the neuros by giving a list of "events" which then sound as if they're happening all at once rather than individually at intervals. Anyways, perhaps food for thought, perhaps not ; )




2 Responses
987762 tn?1331027953
COMMUNITY LEADER
Hey there,

You asked "Do you think this is just sleep jerks?" and to be honest, i actually do think everything you describe for your sneeze experiences, sounds exactly like sleep starts to me. From my understanding and experience, the 'key point' is that you are always "asleep" and woken up by the jerking physical reaction.

I'm not sure if i told you, that i actually didn't think anything of my jerking when meditating, because i assumed it was simply from being in a relaxed state, and just related to the normal sleep start jerks, my husband does all the time in his sleep but the giant wrinkle with that idea, is that it's not at all normal to be jerking like that.......when you are "fully awake" and i am definitely awake and though it's more common if i'm laying down, it also happens at other times too.

You are absolutely right, MS can't be everywhere at once, generally sx's that move around the body, rapidly spread to all peripherals, constantly changing, experienced after reading about it, stop if distracted etc, simply isn't consistent with MS because lesion damage doesn't work like that! Though i'm not sure how you've come up with the idea that we are all giving the wrong impression by listing "events". Could you not be misinterpreting?

Listing the sx a person experiences, during 'each' individual  episode/attack/event/relapse/flare/exacerbation (or what ever you call it), is not suppose to inadvertently give the impression that you experience xyz sx's as 1 individual  episode/attack/event/relapse/flare/exacerbation, if that isn't actually your truth.

Example of relapses:

First episode/attack/event/relapse/flare/exacerbation -
January 3rd 2008
Lost vision in my right eye, duration 3 days - diagnosed Optic Neuritis  

Second episode/attack/event/relapse/flare/exacerbation -
November 12th 2008
Lost vision in my right eye, treatment IVSM - diagnosed ON
Fatigue
Tremor
Duration resolved with IVSM but temporarily returns in hot weather

Third episode/attack/event/relapse/flare/exacerbation -
April 9th 2009
Lost vision in right eye, treatment IVSM - diagnosed ON
Fatigue
Tremor - diagnosed intention tremor
Numb area upper left thigh
Duration resolved with IVSM but temporarily returns in hot weather  

Hopefully that makes some sense and helps you write your list :D

Cheers.............JJ
  
5509293 tn?1428531475
Hi JJ,
Thanks for response. Well that's good that you think these are sleep jerks too!!
With sx what I meant was even with a list divided into relapses, it's easy to fall into 'I have this, this happens, I experience' when they ask you. Docs I have seen never want the list and they don't listen when I answer so I have tended to jumble everything and of course that gives the wrong impression. Just a communication problem. But of course if sx are all over at once, of course it's better to report that that is the case.
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