The 12th Invest in ME Conference, Part 1
OverTheHills presents the first article in a series of three about the recent 12th Invest In ME international Conference (IIMEC12) in London.
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Paralysis-like symptoms normal?

Discussion in 'Other Health News and Research' started by tiredowl, Apr 9, 2018.

  1. tiredowl

    tiredowl

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    Last few months I've been having very strange neurological symptoms, where I literally will not be able to move. Basically it feels like my body becomes frozen, and trying to move my hands or limbs impossible.
    I find it hard to breathe during this, like air won't come in. But I'm not even hyperventilating during this (Like you would in panic attacks), it's like I have no movement at all. Just completely stiff.
    It's so scary :( I don't know if this is normal for CFS or if I should be worried about something else.
    I recently came over something called paraneoplstaic syndrome, but that would mean cancer or something right? I do have the muscle wasting, and even friends have become concerned, but I don't know what is CFS or not.
    I don't know what to do anymore. None of the doctors are helpful.
    Is there a way I can get this paraneoplastic panel tested myself??
     
    Last edited: Apr 9, 2018
  2. percyval577

    percyval577 Senior Member

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    Two times i´ve experienced a paralysis you are telling about, but in two quit special situations.

    1. A friend and I met up with a guy who was used to smoke a lot of pot, which I smoked only quit seldom. It happened that we two had drunken some beer before smoking that pot. As I didn´t like this mixture normaly and therefore wasn´t used to it I needed to lie down and then couldn´t move at all. My thinking was clear, and I thought, if now the house would beginn to burn I would be lost. This was when I was about 18 years old, still without feeling ill which has come when I was 30 years old. But I had a prefatique, or maybe CFS activitylevel 9 or 9.5 or something like that (since I was 4 or 5 years old, I remember now very well).
    2. When I was 39 years old, a few month after I ´ve relapsed very strong from a good enough recovery I was invited by russian people. I was not used to drink alcohol regularly but could still take in some of it. After some hours with vodka I felt the time to go, realy better. I still was confident enough to ride bike. But some wood lying on the small street brought me to crash. I was lying on the street and couldn´t move at all despite I felt no harm and was completly clear in my head.


    I have two more experiences that matches up with yours, but again only for some time.

    3. When my symptoms grew strong again I was unable to lift up heavier things for about nine days. Then I was able to again. I am now recovering not too bad. Last year I tried two times to ride bike for longer distances which I managed, but I got afterwards severe pem. This year not (one longer distance), but I felt during riding sometimes very weak and slack (still I can drink a beer in such a situation and can go on, but not normaly now).

    Interpretation:
    In my opinion CFS is caused in the brain. I would guess, taking the first two episodes together, that I suffered from suddenly-to-much Dopamine-receptor-stimulations, which would not match up to a row or something like that, indicating that I was on to low dopamine in generel (here I figured out these years that tyrosine is a very good help). Nitric oxide would re-uptake inhibit dopamine which would be in a first step to much and then I think to low, so chaotic.
    Dopamine may be involved in the third episode as well, it may be suddenly empty causing some lack of organisation in the extrapyramidal system. Here a dopamine-receptor-stimulating beer helps here as well with its effects on NMDA receptors (alcohol too) and microglia (hops), but with similarity to others I almost can´t tolerate any beer under normal circumstances nowadays.

    4. I also know a breathing problem very well. I started (with great enough success so far) a low (or lower) manganese diet. At the beginning I made at some points mistakes and got two times very strong breathing issues. I couldn´t breathe well technically, very devastatingly. What happend was obviously that the manganese induces the microglia to produce nitric oxide in a huge amount influencing all receptor-neuretransmiiter-systems (I gave the literature in a thread.)

    I hope this might be a help to judge the situation you ´re in.
     
    Last edited: Apr 10, 2018
  3. kangaSue

    kangaSue Senior Member

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  4. Crash Davis

    Crash Davis

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    Do you have any nasal/sinus congestion when this is happening?
    Do you have any soreness at the top of your scalp when this is happening?
    Do you have any abnormal sensations across the front of your face when this is happening?
    I don't have answers for the problem, I'm asking these questions for myself as these two things seem present when I have neuro or the sensation of breathing problems.

    My arm periodic arm paralysis stopped about 3 years into the illness for whatever reason.....also, my paralysis only fully happened when I was awakening from sleep.....I have digits on both hands that sometime become numb, but I've determined that is almost always due to holding them in a certain position for too long.
     
  5. tiredowl

    tiredowl

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  6. tiredowl

    tiredowl

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    Well I don't know, but I have been having weird stomach issues for some months now.
    Thanks, but I don't live in the USA. I'm in Europe. So I need to have some form of requisition.
    :(
     
  7. tiredowl

    tiredowl

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    Well I sometimes get chills in my head, if that makes sense?
    Also I'm even more bound to my house when this happens, because I'm scared that I will walk funny.
    And too tired to drag my feet across the floor.

    Hm, well I've had CFS for 10 years. I'm 24 now. It seems paraneoplastic syndrome would be very rare in someone so young, but every symptom fits to a t.
    I searched the forum for this, and seems there were some people who was dignosed with this prior, which makes me more scared. Or maybe people with CFS can also have these antibodies, causing inflammation
     
  8. percyval577

    percyval577 Senior Member

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    I would mean we are all slightly different in genetics and histories. Maybe it is possible to figure out some same things in different circumstances. Of course it will stay difficult as long as no success likes to indicate a bit of truth.
    It was horrible indeed, on the other side I am used to horror. I hoped for non car (not unlikly there) or at least a car driver who was not drunken and able to recognize me.
    Really, I would be careful with manganese, it has been shown two times (counting as a proof in science) that manganese in combination with (any) lipopolysaccarides will upregulate gene expression of nitric oxide synthase of the immunesystem in the brain.This nitric oxide would affect the well guessed, and vast, neuroplasticity mechanism, resulting in less or more elevated action potential in the brain all over.
    This way hasn´t appeared so far on any map, not for diagnostic nor therapeutic issue. (ps: lipopolysaccharides are common bacteriafragments)
     
    Last edited: Apr 12, 2018
  9. kangaSue

    kangaSue Senior Member

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    The Clinical Neuroimmunology service attached to one of Oxford University's hospital in the UK is an international referral centrel for the testing of antibodies in neurological disorders if that's any help to you.
    Used to be run by a Dr Angela Vincent but she has now retired.
    https://www.ndcn.ox.ac.uk/team/angela-vincent
    If a cancer or tumour hasn't been found within 5 years of symptom onset, chances are that it is very unlikely to be a paraneoplastic syndrome. Most cancers appear within 2 years here.
    LEMS (Lambert Eaton's Myasthenic Syndrome) can have similarities with CFS, not sure if it is associated with periodic paralysis though.
     
  10. tiredowl

    tiredowl

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    Thank you. Well my symptoms became quite severe 2 years ago, followed by a short remission by Imuran.
    After quitting Imuran (it causes immune suppression.) I had a few months where I was ''old self'' again.
    Then I relapsed with CFS and now these neurological symptoms are becoming ever more bizzare.

    I will check out this, thank you. how do I apply to this center? Do I need to travel there myself?
     
  11. kangaSue

    kangaSue Senior Member

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    I had blood drawn and sent there for testing from here in Australia. This was all arranged for me through our public healthcare system as a patient at my local major tertiary hospital so I don't know what the process is.
    The same service was offered to me through one of our major private pathology testing companies (at significant cost) so you could enquire about it at whoever is a major pathology testing provider where you live if it's not able to be done through a hospital.
     
  12. tiredowl

    tiredowl

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    My symptoms are getting worse. They are now almost constant. I feel unable to feel the floor when walking, have no balance, shaking in hands. It's just getting weirder. I'm too sick to travel anywhere so I'm stuck like this :(
     

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