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Not fatigue or weakness - is it neurological ?

Discussion in 'Post-Exertional Malaise, Fatigue, and Crashes' started by xchocoholic, Sep 15, 2013.

  1. xchocoholic

    xchocoholic Senior Member

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    I used to say that my legs got tired from walking but that turned out
    to be a neurological disconnect from ataxia. It simply disappeared when
    my ataxia vanished.

    At the same time, my visual problems when walking vanished as did
    my problem with washing my hair. Objects would appear to bounce
    when i would try to focus while walking. And my arms would
    suddenly become so weak that i had to let them rest.

    I suspect that the rest of my body is still affected by whatever neurological problem
    this is. Ataxia is the result of damage to the cerebelum. What if there is still damage
    but not enough to cause ataxia.

    btw, ataxia can be dx via a rhomberg. I failed this for 16 1/2 years but never
    since September 2006. I suspect i had gluten ataxia.

    Does anyone know the term for weakness caused by neurological or brain damage ?

    tx. x

    ps. my internet access is limited so please excuse my mistakes.
  2. xchocoholic

    xchocoholic Senior Member

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    I'm trying to look into this but my internet access is too annoying.

    I have trouble with fine motor skills. Writing is exhausting as is doing my nails or
    eyebrows. I have nocturnal myoclonus and now a movement disorder if
    blood is drawn. I just started getting seizures with extreme stress.

    I've seen at least 6 neurologists but none of them have found the problem. I suspect
    my cfs dx interfered with getting to the truth. Dr Mercola states that brain damage
    can be from vaccines. And we know other brain diseases can be from heavy metals.
  3. justy

    justy Senior Member

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    Hi Xchoc - not sure what your question/discussion point is here. BUT reading your post made me think of my own symptoms, especially the part when you say objects appeared to bounce when walking. I have had this problem dreadfully and have found it very hard to discribe or discuss with others - nobody ever semes to know what i am talking about.

    As far as i can tell, when we walk we are obviously moving and we move up and down as well as forwards - yet i'm sure before i was ill and for most other people they should'nt notice the up and down movements of their surroundings whilst walking, but for me at times it has been unbearable and very disorientating. There was a thread a long time ago discussing wether this was in part due to some kind of sensory gating deficit issue.

    I also intermittently have night time myoclonus which can be very distressing. I have never tried cutting out gluten for very long periods - most i did was about 8 months and it had no effect whatsoever - but maybe it wasnt long enough or there was gluten in some things that i hadnt noticed.

    Take care,
    Justy
    xchocoholic likes this.
  4. xchocoholic

    xchocoholic Senior Member

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    Hi justy

    The bouncing objects disappeared at the same time my ataxia did. Dr Hadjivassilou
    said gluten Ataxia can include occular ataxia so i assumed he meant that symptom.

    It's been awhile since I Googled gluten ataxia so maybe he's cleared this up by now. He also stated
    that weakness when raising ones arms was related.

    My point in starting this thread was to look at neurological or brain damage
    as a possible cause for what we're calling fatigue and or weakness.

    Eliminating my ataxia showed me how the brain controls our body's ability
    to move. The fact that a rhomberg test confirms ataxia alludes me. A neurologist
    would know why tho.

    I'm just not sure how to connect the overall feeling of weakness to our brain
    function. Of course the weakness I have at this point could simply be
    from oi. But what part of the brain would be causing oi ?

    And is physical therapy an option ?

    Just trying to brain storm with like minded people here. Thanks X
    justy likes this.
  5. xchocoholic

    xchocoholic Senior Member

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    ps. dr hadji tells his patients to give it one year minimum. My ataxia vanished
    after one year exactly. I was shocked since i just thought my arms, legs and eyes were
    weak from cfs.

    The white lesions on my brain vanished too about this time.

    I just ran into someone dx with ms and using a motorized cart on Saturday and
    it got me thinking about this. She fails the rhomberg and sees objects bouncing
    when she walks. And her hair is short because she can't keep her arms up
    to wash it. I seem to have a lot of ms symptoms.
    justy likes this.
  6. rosie26

    rosie26 Senior Member

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    I would like know the neurological condition/name for weakness in the legs too. I also experienced it in the spine. Unable to hold myself up when sitting due to jelly-like weakness in the spine. This was very severe for the first 2-3 years of my illness. Very worrisome, so much so that I queried whether I also had MS.

    I am not convinced that it is muscular, it feels more neurological to me. Especially since I also experienced the same kind of weakness in the spine as well.
    xchocoholic likes this.
  7. xchocoholic

    xchocoholic Senior Member

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    iyHi rosie26

    You reminded me that I used to have that too. I used to have to roll out
    of bed onto the floor to get up. My body was too weak for me to raise up.

    I'm guessing my weakness was from gluten since I have the DQ2 gene
    and neuro problems are commonly found in dq2s.

    I had to exercise in order to regain strength but that was easy once my
    muscles worked again. I haven't taken the time to do sit ups in about 4 years now
    but i can still sit up effortlessly. I could only do sit ups by cheating at first
    but slowly got to where i could do 30 plus easily.

    I keep remembering how it felt to exercise once my neuro reaction was
    gone vs when I couldn't exercise. The best description I can come up with is that
    I could feel my muscles responding
    and getting stronger.
    rosie26 likes this.
  8. xchocoholic

    xchocoholic Senior Member

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    My editor is a pain so I'm just going to post again. Androids. Bleh.

    I went to physical therapy twice to try to rebuild my body after my ataxia cleared
    up but failed both times due to pem. I learned tho that i can exercise easier
    when I'm supine because of my oi. I can even simulate running while
    laying down.

    Both therapists recommended core training so I'm going to start doing that
    at home. Hopefully I can avoid pem by not using my energy going in to
    an office to exercise.
  9. Hanna

    Hanna Senior Member

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    I have really no knowledge in the field, does the ataxia has to be linked to gluten intolerance?
    I have those symptoms of things bouncing when walking to the point I have to hold something (wheelchair), wall etc to be able to make some distance (though limited), lack of energy in lega and arms etc... have failed Romberg for 15 years but I have been gluten free for more of 3 years and symptoms didn't disappear...
    Could this be a sort of ataxia linked to something else?
    xchocoholic likes this.
  10. xchocoholic

    xchocoholic Senior Member

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    Hi Hanna,

    I'm not an ataxia expert and can only speak from my experience with gluten
    ataxia. It's very important that anyone trying the gf diet be careful about
    gluten exposure. There's a thread on the NAF, National Ataxia Foundation,
    forum in the All about ataxia section on this. Atilla posted it.

    Imho, I'd ask others on that forum for other causes of ataxia. The moderators
    Bear and Atilla can answer this.

    good luck. x
    Hanna likes this.
  11. xchocoholic

    xchocoholic Senior Member

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    hi again.
    Hanna

    In case you decide to post on the naf forum, I just wanted to suggest that you specify you're looking for causes
    of ataxia. I know both Bear and Atilla know about the different types
    of ataxia but I'm not sure if causes other than gluten have been found.

    I haven't been there in years. And all kinds of possibilities were being
    thrown around at the time.

    I'd love to know what they say. tc ... x
  12. xchocoholic

    xchocoholic Senior Member

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    Oops. Forgot to say that I started this process by eliminating gluten, dairy,
    soy, corn and chemicals and this may have played a role in why I healed.
    I also ate a lot of brain foods.

    I couldn't tolerate supplements so at least I know those didn't play a role.

    There are others on the web who've healed their ataxia too. Hopefully you'll
    find some at naf. I met several a few years ago when I posted my experience but lost
    track of them.

    good luck with this. X
  13. Hanna

    Hanna Senior Member

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    Thanks Xchocolic, I'll have a look at the site you mentioned.

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