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Thread: Fasciculations, cramps, are they good or bad signs?

  1. #331
    Forum Member Barry52's Avatar
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    Hi Marieline,

    If it makes you feel better it's raining here and has been for 2 days. This is our British summer!

    I also often think of Ray aka fishmate and I ponder which of the supplements are helping me. I intend to discuss the pros and cons of lunasin and neudexta with my consultant when I see him later this month.

    Best wishes,
    Barry x
    Iím going to do this even if it kills me!

  2. #332
    Forum Member marieline's Avatar
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    Hi Barry,
    Currently it must be about 13C it's very very cold, it's been an unusually mellow winter so i was seriously not prepared for this.
    Yes i took on coconut oil when he mentioned it, that was over 3 years ago, and i take it everyday, even when i was hospitalised i had my jar of extra virgin coconut oil on my bed table. I also took my curcumin forte, Vit D, Vit C, Zinc , magnesium and Co Q 10.
    I got away with taking my supplements because i told them i took those for the MND.
    LuNasin? Neudexta? i havent heard of those yet? Are they new MND drugs? Keep us posted with the results thanks.

    Yes Ray motivated us to help ourselves, he was good that way, even if he was a bit rough on the edges, but he had a soft centre. God bless his soul.

    Well all the best with the Specialist appointment.
    Best wishes x
    Marieline

  3. #333
    Forum Member marieline's Avatar
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    PROPOFOL benefits are wearing off . I had a good run and cannot complain, imagine no spasms, choking, even the teeth marks on my tongue were starting to fade. My tongue had even loss the flaccid, quivering (natural aspect). I had forgotten about choking on my spittle, That it hurts to bite my inner cheek. How disappointing to see those new tooth mark again on my tongue during my morning ablution. The fasciculations are back with a vengeance drumming away at the large muscles in my buttocks, thighs, abdomen, lower legs. The cramps are not so bad so far.
    My broken hip is now more painful than it was after surgery because i am unable to control the spasm or kicking of the injured leg.
    Now a dose of Propofol would take care of all these symptoms.

    Well If Propofol can make you forget that you have a disease, isn't it worth consideration for trial at least as prophylaxis for treatment of said illness?

    Anyone one out there who understand pharmacology, surely there must be another drug that can mimic Propofol!

    Be nice to share with us.
    Best wishes
    Marieline

  4. #334
    Forum Member Dude's Avatar
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    Hi Marieline Is Propofol not available in OZ ?. Dude xo

  5. #335
    Forum Member nunhead_man's Avatar
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    Can I suggest cautiously that fasciculation in MND (not as in running your heart!) is symptom of the motor neurons firing away unnecessarily and heading for burnout?

    My neurologist is a medical researcher (https://kclpure.kcl.ac.uk/portal/jemeen.sreedharan.html) and suggests, if I have him right, that in MDN neurons are burning out – hence ALS appearing in the dominant side first and those really active (e.g. cyclists, climbers, footballers) seeming to be more like to get the non directly genetically generated MND versions

    Best to all

    Andy

  6. #336
    Forum Member marieline's Avatar
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    Hey Dude, i love saying this. Propofol unfortunately is i believe only used by anaesthetist. I has come up before in conjunction with MND but i don't think any doctor will prescribe it. Is it available in UK? cheers Dude xo

  7. #337
    Forum Member marieline's Avatar
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    Hello Andy, the purpose of this thread was to gather facts about a predominant symptom of MND. I have to say though that fasciculation has always been bilateral for me, but as you say, 1 side is always worse, perhaps the side that is dominant. Which make sense. But i have to also agree with the explanation i received from my neurologist. That the nerves are trying to reconnect and is doing a poor job of it.

    Thank you for link.
    Best wishes
    Marieline

  8. #338
    Forum Member marieline's Avatar
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    I saw my next gadget to purchase today. After such a long search, i saw the Travel Scoot ( made in the US). Something that i can get in and out of the lift and park in my tiny space.

    Terry and all the boys if you have a better suggestion please i am listening. It is 85cm in length, still weighs 15kg. Battery fully charged will cover 4kms, that is good right? you can check it at www.zingerchair.com.
    cheers Marie

  9. #339
    Forum Member Barry52's Avatar
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    Hi Marie,

    I am confused by your post as when I search travelscoot it shows a 3 wheeled scooter. When I open your link it shows a 4 wheel folding electric wheelchair called zinger.

    3 wheeled scooters are unstable for top heavy people like me but I am pleased you have highlighted the zinger. I have been searching for a lightweight portable power wheelchair to use on aircraft and cruise ships and this seems perfect. As long as I have strength in my arms and hands I think it will fit the bill. Speaking of bill it is not cheap at £2000 but with MND that's the price of freedom.
    Iím going to do this even if it kills me!

  10. #340
    Forum Member marieline's Avatar
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    Hi Barry,
    The electric wheelchair and the travel scoot is sold by the same company. If you google zinger chair, you will be able to also find the travel scoot. Did you notice that the power chair can be folded just like a wheelchair?
    I am getting my hip strong enough before i do a trial run. Yes it is not cheap $3800, i can go on a cruise, to concerts, attend the hop man cup I watched a husband retrieved the travel scoot from his car, it looked just like a folded pram (probably heavier).

    I like the models, if you see something more compact lighter please let me know.
    Best wishes
    Marieline

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