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Partial paralysis with ME only very temporary?

Discussion in 'Neurological/Neuro-sensory' started by Purple, Aug 14, 2012.

  1. Purple

    Purple Bundle of purpliness

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    I have nobody to ask this so I am asking here. Does anyone experience partial paralysis - ie. when a part of their body goes completely limp and there is no feeling - but it only lasts for days (or sometimes only hours)? So very temporary? My impression is that with ME, the most severely affected people are paralyzed for long periods of time. But I don't hear of only such temporary episodes that I experience (I am severe ME by ICC).

    I get periods like this when a part of my body just stops working and I cannot move it, with no feeling at all (you could poke me with a needle - I feel nothing!) and when the feeling and movement starts coming back, it's extremely painful. I can almost always trace the onset of it to doing too much or an infection. It can be any part of the body (though often it tends to be either the left side or whatever part of the body I am overusing or the face/tongue). If it happens to be my lower stomach/back area: well having no feeling and no control over those muscles can lead to certain 'accidents'.

    I had a period of sudden paralysis many years before ME so I know it's the same thing (except for the extra pain in ME).

    Anyone experiences something similar?
  2. nanonug

    nanonug Senior Member

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    Let me reply with a question: have you been to a neurologist?
    Enid likes this.
  3. Tammy

    Tammy Senior Member

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    Purple, I had some pretty bizarre and severe neurological symptoms when my illness was at it's worst.............I've experienced the paralysis, numbness, etc. It was pretty scarey to say the least. I went to see 5 different neurologist and nothing ever showed up on tests.........but this was about 14 years ago. I agree with nano..........you sure want to see a neurologist if yu havn't already. By the way.......I no longer experience those symptoms. Tammy
  4. Purple

    Purple Bundle of purpliness

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    Thank you for your replies. Yes, I have been investigated, no cause found - it's probably all part of the illness. Yes, it's unpleasant but in terms of other symptoms, there are worse symptoms (for me personally) than this. It's only been temporary so far... and corresponds with doing too much so I guess that's how it can prevented.
  5. lnester7

    lnester7 Seven

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    I have temporary paralysis when I push too much, usually they can range from 2h to 6h. I have never tried to put a needle because I cannot move at all or talk, but in my case is a more I cannot move, like my muscles a drained of any strength. I am pacing better so they haven't happen for at least a few months. I get burning, tingling and numbness (before) I am getting tested for MS but I think is part of ME.
  6. Nielk

    Nielk

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    How does one get tested for MS and Purple - were you ever tested for it?
  7. taniaaust1

    taniaaust1 Senior Member

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    When I was sicker (back when I also used to have incidents of going into like a comatose state where I'd be out of it for days at times).. temporary paralyisis wasnt uncommon for me when I was awake.

    Its a long time ago now and I was so very sick at the time, so I dont remember much now about those days ... I dont remember if I got just part of my body affected but do remember incidents in which more so my whole body was paralysed.

    Unlike purple.. I dont go into pain in my paralysed body parts after my body comes out from the paralyses. The part thou can be still a bit numb and weird feeling (has felt like hand isnt attached to arm even when paralyses has stopped). Ive never been able to prick myself while in a paralysed state to know if I can feel pain then.

    I had one day where when I was completely bedridden, II couldnt even lift a finger (it was like my brain couldnt get throu to it the signal to move as much as I tried, I was unable to move it.. it scared me.. I was worried I could end up staying like this..not being able to move my body at all). Those paralysis crashes happened after I over did it (which overdoing it at that point of time was just sometime as simple as after feeding myself) and sometimes would only last a short time while other times longer where I couldnt move even a finger for hours. (they werent incidents of what is known as sleep paralsyes where someone finds oneself paralysed on waking up which is actually not an uncommon thing even amoung healthy people).

    I still at times do end up finding it very hard to move body parts after too much use eg my hand ends up not being able to move fast as im trying to move it.. but not nowdays to the point where its completely paralysed.

    I'd like to warn everyone who gets paralyses after using body parts to take great care as this can apparently cause PERMANENT damage in some. I knew a ME person years ago online who had ended up with a PERMANENTLY DAMAGED (i cant remember which now.. it was either just her hand or her whole hand and arm) after she keep pushing to do something with it and ignored the pain and every thing the ME was doing to it. She over worked it and permanent paralyses was the result.. Her doctors via tests then done said she had damage but couldnt explain at all why and couldnt fix it or offer any solutions. (I wonder if GET has ever damaged anyone to this extent?). It was thou the ME and pushing the arm/hand in doing an activity until it was completely useless which did it.
    Shell likes this.
  8. xchocoholic

    xchocoholic Senior Member

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    I mistakedly chalked up my neuro symptoms including ataxia and foot dragging to me/cfs for almost 20 years. Most of these
    were eliminated when I took the gluten, dairy, soy, chemicals, etc out of my diet.

    I've yet to meet a neurologist who knows this but integrative / functional doctors do.
    That appears to be changing tho as more doctors learn how gluten, dairy, etc can cause
    neuro symptoms.

    The most accurate and up to date source on gluten is theglutenfile. The authors have thankfully kept this info in
    one place so it's easier to find.

    Tc . X
    taniaaust1 likes this.
  9. hurtingallthetimet

    hurtingallthetimet Senior Member

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    if you havent, you really should see doctor again...i have numbness back siatcica nerve damage pain and espically left leg...sometimes right,,and arm will tingle...besides the pain...and go to sleep...like when i was normal and foot sometimes would...but its whole arms or legs...again mostly left leg...but never complete paralized where cant move..

    not sure since last you went to doctor you mentioned been awhile, unless i misunderstood...so you should go again make sure nothing else going on...these illness bring a million symptoms and illness with them...its crazy
    take care
  10. merylg

    merylg Senior Member

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  11. Shell

    Shell Senior Member

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    Purple, I have a permanent numb patch at the top of my right leg and intermittent numb patches on my chest and down my right arm which will make moving my arm difficult - but not to the point of paralysis.
    My right leg becomes dead if I try and walk too far. In the past I did "GET" as the doctors told me to strengthen my bad leg by walking. So I would get the crutches and push past the pain in both the leg and my arm.
    I am not unable to even walk to the end of my road and have to use a wheelchair for even short journeys. The damage is done.
    As taniaaust1 mentioned GET has left me more disabled than when I started. But then I had no dx for 8 years either.
    My own view of neurologists isn't printable. Let's call them a bunch of wazzacks and leave it at that.
    I've never thought of the fact the leg just switches off as paralysis - but I guess that's what it is and it comes and goes; it comes when I walk and goes when I stop.

    My MRI does show some spinal damage in two places which a chiropractor has said is enough to cause the nerve damage effecting my leg. No neuro ever gave me a straight answer on it.
  12. caledonia

    caledonia

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    Just throwing this out there - Lyme can cause a lot of weird neurological symptoms.
    merylg and taniaaust1 like this.
  13. taniaaust1

    taniaaust1 Senior Member

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    If you can still move it at all even if its very hard and slow movement, slower and slower till hardly can move at all... I myself wouldnt call it paralyses .

    I dont know if I understood is that is what is happening with you or not.. but I also was getting this thing which I wondered if was more what is going on for you, in which due to using something, the burn out can happen very fast thou too after starting to do something.. it gets VERY HARD to move.. still moves but it is a real struggle to move and it moves a lot slower.. as activity is continued..slower and harder till it cant be hardly moved, it looses power to move, is this more what you were refering too? (think of something running on a battery which runs down and out).

    I find in this situation from the start of the symptom to the end where one can hardly move something cause one continued doing so ones body stops on one.. can actually happen in like only 5-10 seconds..so thou it is a linear process and gradual..in time sense it is fast too.

    In my case.. I see that symptom when I get it, not as neurological like when I get the paralyses... but rather as some kind of mitochondrial problem instead (not producing energy and hence when I use something.. the energy is used and more isnt replaced fast enough till no energy there to function it). If I stop what I was doing its like the body part recharges and the issue QUICKLY goes (which then must allow the mitochrondria to catch up with their energy production), that is till the body part is used again and the same thing will happen again.

    Where I dont get pain with my neurological? paralysis.. with this other thing (mito issue?) I do get pain.. while the part is getting harder and harder to work (and till its better again) for myself..pain is a feature.

    I think too Ive read that in mitochrondrial issues things can be damaged if things are too pushed.

    Anyway..I wanted to mention this as I think there are two different things involved in all this.. one which causes more like a true paralyses like state of the body or body parts (a neurological event?) while the other seems to be like a completely burn out its energy of a body part in which one looses movement and like starts to like "paralyse" .

    With my paralyses episodes..Ive had no control over things when they've happened.. with the complete energy burn out episodes.. those thou it gets to stage where one cant use a body part cause its too hard to move.. one is still in some control as one can stop trying to do whatever you were doing and usually know the part will just come good again. With the paralyses.. its scary as it isnt like that.. you dont know when its going to come good again or even if it will.. it also seems to happen without any warning.

    Im not trying to say one of these states are better then the other or less dangerous then the other (I think both could be harmful).. just that I think they are different states with different l processes involved. I think there are so many different aspects to this illness.. with some causing like symptoms.
    Sparrow, Shell and merylg like this.
  14. Shell

    Shell Senior Member

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    I think that's a good differentiation. I'm not really sure what exactly goes on with my leg. Certainly my hand just gives up as it gets tired - hence my inability to write for long. But the leg has been a problem even during my short remissions in the early days. I tend to believe it's because of the nerve damage done with the spinal wear I have in the lumber and cervical areas. I sometimes wonder if, by some miracle, I could get rid of the FM, ME and all the other stuff - would I ever be able to ditch the wheelchair, or would that leg start behaving itself?
    But as you say, it's not a true paralysis as such. It just goes dead. I get serious hip pain and (don't laugh) a horrible stinging pain in my big toe but the rest of the leg is like a slab of meat that just hangs there. Weird.
    I suspect there are diffierent processes as you suggest.
  15. Sparrow

    Sparrow Senior Member

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    Mine is just like what taniaaust1 described - When I used to overdo it way too much, I would reach a point where the battery just ran out. Slower and slower and harder and harder until I got to a point where I literally couldn't move that body part at all. Took time before I could move it again, and then significantly longer before the batteries were "full" again. I've viewed it as a mitochondiral issue too.

    I shudder to think of how much damage I probably did to myself before I realized just how serious (and long term or permanent) the consequences could be.

    I hope with more rest and less use that your issues resolve. I'm now at the point that I don't have this anymore (or at least...that I no longer push anywhere near that level of depletion). Best of luck to you!
  16. ePat

    ePat

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    Those of you who experience "paralysis": have you ever had your reflexes tested during these episodes and what was the outcome ? Were you told (by your doctor) that you had in fact (transient) paralysis, or is this just your way of describing your symptoms (such as "dead battery" = "paralysis") ? Particularly @ Purple: you say that you have been investigated and that no cause was found. Did you have clinically validated paralysis that nobody was able to find a cause for ?
    I hope you guys don't mind me asking such questions. But these are different things that seem to get mixed up under the term "paralysis" the latter being somewhat flexibly used here. I am familiar with body parts "running out of steam" and "going numb" after overuse. I am also familiar with "patches" where there is a loss of sensation for sometimes long periods of time (years). But neither of those are actual paralysis. I would like to know if there is true paralysis in ME (paralysis diagnosed by an MD), or if this is just another term used by laymen with the intention to describe a symptom. - Just like a lot of people will say that they have "sinusitis" when they only have a blocked nose and nobody has actually confirmed a diagnosis of sinusitis by xray, ultrasound, CT or MRI.
  17. lansbergen

    lansbergen Senior Member

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    ePat
    I have reason to assume in my case it is mainly local endplate failure caused by inflammation. When I was at my worst I think there was a central problem too.
  18. taniaaust1

    taniaaust1 Senior Member

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    When paralysed.. as Ive never been capable of movement at those times (except my eyes and my mouth.. I can still move..its just the rest of me)..so no doctor has ever got to see me and test my reflexes when Im in such a state (I strongly expect they'd be actually absent). Its a pity I live by myself and someone else couldnt have called an ambulance and had me taken to hospital for testing at such a time.

    What I do know thou about my reflexes on testing by doctor WHEN I HAVENT BEEN in a paralysis state.. is that my reflexes are very abnormal at times on testing.

    I got diagnosed at one point with hyper-reflexia due to that (a doctor was almost kicked in the face while testing my leg reflexes.. my leg reflexed out all the way). (When Im getting a lot of hyper-reflexia, Ive been also observed by medical people as having my pupils not responding right either and being unequal or responding unequally These symptoms once had a doctor on seeing them, quickly call an ambulance to take me to the main states hospital for further testing...

    I also have lost body sensation at times like MS patients do.. and at such times cant feel heat so tend to burn myself.. and cause I dont feel it.. I dont aways react in a reflex reaction eg get hand away from burning water or stove http://s1190.photobucket.com/albums/z458/taniaaust1/?action=view&current=whatblister.jpg (is a picture of one of the blisters Ive had this year from burns.. didnt know I'd even burnt myself till I saw it the next day and then remembered I'd got splashed with boiling water ..which I didnt feel at the time.. no reflex action. I only knew the water was hot due to I'd just boiled the kettle it came from and it got spashed).
    Fortunately right now Ive stopped burning myself so much and have my sensation back.

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