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  • Guest's Avatar
    Guest replied
    No need to apologize John, the folks on this forum understand all you are experiencing, mentally, emotionally and physically.

    You will find a lot of support here even in your darkest hours with your thoughts there is always someone here to help, and listen.

    You may have many, many years ahead of you that you will still be up and about as other members on this forum are, I hope that to be for you as well.

    Hugs
    CC xox

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  • Guest's Avatar
    Guest replied
    Apologies that post came up twice, technology ain’t my strong point.

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  • Guest's Avatar
    Guest replied
    Hi CC,
    Deep inside I kind of new that, it was just something to cling on to, I guess there is no way out of this hell other than passing away with some other illness, at the moment the mental torture is worse than the physical pain, I hate to be negative but like most people it’s not the fear of dying it’s what we have to go through. I can’t get the dark thoughts out of my head and it’s a daily battle to try and find some solace, the drugs don’t work, the counselling don’t work so I understand how vulnerable people are to these false promises of miracle cures.

    Apologies for the depressing words.
    Best wishes, John

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  • Guest's Avatar
    Guest replied
    Hi John

    I wish you peace of mind, and comfort, and sincerely hope you can find it. Maybe counseling could help.

    In my opinion you are better off putting your time, energy, and money into 'living' the very best quality of life. There is so much technology out there to assist you if a time comes you may need it, and brilliant minds are at work all around the world finding the cure, and it will come.

    There is an old saying I like, and really very true 'Today is the tomorrow you worried about yesterday'

    CC xox

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  • Terry
    replied
    Hi John,

    To start with everyone finds this diagnosis deverstating, but normally most people get back to living life. Hope you can do this too.

    Love Terry

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  • Guest's Avatar
    Guest replied
    Cheers Terry

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  • Guest's Avatar
    Guest replied
    Hi Cc,
    Deep inside I thought that would be the case, I guess like everyone else on here I’m looking for something to cling on to, seems the only hope is to pass away with something else rather than go through all this to the bitter end, I should be more positive but the dark thoughts never leave me, for me at the moment it’s the mental pain rather than the physical pain, I hate to be so negative, but I think most people with this disease must be going through the same mental torture that comes with this diagnosis.

    Love, John

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  • Terry
    replied
    Hi John,

    Sorry to depression you more but Cc is right. Maybe in the future it will be of sum use.

    We have someone in Suffolk that went on National TV and reported that it was working but that was false, her family was just trying to support her and keep her position.

    I think that Jer lives there and it is covered under his insurance.

    Love Terry

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  • Guest's Avatar
    Guest replied
    Hi John

    Stem cell does not work don't waste your money on it. There was one documented case here in the US where the guy did it in a clinical trial setting, and actually got positive results but then developed brain cancer and passed away from the brain cancer (cancer can be aside effect from stem cell treatment)

    Be careful of online sites claiming they can treat/cure ALS/MND with stem cell it is not true.

    All the best
    CCxox

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  • Guest's Avatar
    Guest replied
    Hi Jer,
    I'm extremely interested in your descion to go to Thaland for stem cell treatment , I contacted a clinic there via their website and never got a reply, do you have any info in regards to your proposed treatment and associated costs ( hope you don't mind me asking )
    Have you read up on any success story's ? I have read some negative reports on Chinese clinics, I guess we are all desperate to find a way out of this hell, I am prepared to try anything.
    Please post on your experience if you go ahead.

    Best wishes,
    John

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  • Guest's Avatar
    Guest replied
    Thanks Adele that is so helpful. I have not gone through with it for a number of reasons but will present the doctor this info. As always its a money thing out here too.
    Best wishes Jerry

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  • MNDConnect
    replied
    Hi Jer780,

    I have just checked with my colleagues in the research team and their response is below:

    There have been a few studies looking into whether mercury/dental fillings are linked to an increased risk of developing neurological diseases. However, many of them came to the same conclusion that people with mercury/amalgam fillings are no more susceptible to neurological disease than those who have no fillings. The amount of mercury we may be exposed to from amalgam fillings is also likely to be much smaller than mercury we are exposed to via environmental factors or food.

    The Food and Drug Administration (FDA) had recently reviewed risk of mercury poisoning from amalgam fillings and concluded that the low levels of mercury vapour evaporated from the fillings were not associated with health problems in adults (and children over 6 years of age) - find the report here. Some dentist might also argue that unnecessary removal of amalgam fillings (that is, when they are not damaged) might in fact lead to the release of more mercury during the removal process.

    We would suggest to check with your dentist and discuss this issue with your doctor as well.

    Best Wishes,

    Adele

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  • Ellie
    replied
    Originally posted by Jer780 View Post
    ... the Docs insisted so I'll have to toe the line.
    Jerry, do your research first before thinking long & hard about it. You may lose more than you stand to gain, I'm sorry to say.

    Ellie x.

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  • Guest's Avatar
    Guest replied
    Thanks Terry, I agree with you but the Docs insisted so I'll have to toe the line.
    BW Jerry

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  • Guest's Avatar
    Guest replied
    Thanks Ellie

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