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  • Alternative treatment

    Posted by Mary on May 13, 2019 at 9:04 am

    Hi I have seen advertised a herbal concoction for reversal of als company is called herbal something can’t remember now! Also vitamins what r all your thoughts, mary

    Mary replied 5 years ago 3 Members · 4 Replies
  • 4 Replies
  • Jean-Pierre Le Rouzic

    Member
    May 13, 2019 at 9:46 am

    Hi Mary,

    There are a lot scammers out there, most claim to be doctors and some even claim to be pALS! The mental cost of ALS is excruciating, most people trust whatever they see if there is a slim possibility of hope.

    What can be said for sure is that real medical doctors and scientists do not known any way to deal with ALS as a disease, but drugs can make the life more comfortable. Some doctors prescribe anxiolytics, and muscle relaxants, they also happen to prescribe vitamins, including vitamin D.

    Some pALS have put forward their own proposals for treatments, usually is consists of a long list of pills. Some minds even tell that ALS is due to an imbalance of (put some impressive scientific name here). I tried to follow this topic for the last six months and I did not see anything very striking.

    One main problem is that there are many ALS sub-types and there are many diseases that looks very like ALS (like Wilson disease which is curable). Remissions are extremely difficult to trust because neurons are the longest cells in the body and they do not divide at all. Even replacing them with stem cells is unlikely. Stopping the disease may exist but as there is no biomarkers for ALS, the ALS diagnostic is by exclusion, it is not a very reliable, contrary to diagnostics about communicable diseases. Some pALS tell their diagnostic was refined. And the process for ALS diagnostic is often two years long.

    So when someone claims some drug, some “DIY protocol” had cured them, often it simply means that this person did not had ALS, but another disease (an ALS mimic) in the first place.

    One person (jcexpress) says that a lot of lab tests must be made and any abnormalities must be corrected. It sounds to me as quite reasonable.

    I would advice to find “a good doctor” (in most countries there are ALS centers), to work closely with her/him, and to be careful with the incredible number of proposals on the Internet. Keep your money for you, if you have ALS you will need to buy/rent a lot of things.

    Good luck

    JP

     

     

     

  • Mary

    Member
    May 13, 2019 at 9:55 am

    Thankyou for the good advice, the neurologist I see end of month is one of the best she is tied in with als research etc it all seems so daunting I am taking cod liver oil and vit C and b at the moment, I read about someone taking copious amounts of coconut oil and bought same made me heave better as massage oil! Mary

  • Dagmar

    Member
    May 13, 2019 at 11:56 am

    Mary,

    The consensus is with what Jean-Pierre stated – – there is no current treatment to “cure” ALS or, “reverse” it – – traditional medicine or alternatives.

    Anyone claiming to have a cure is a sham. Unfortunately, there are unscrupulous people who take advantage of our vulnerability just to line their own pockets.

    Find a good doctor who is experienced with neurological diseases; ALS specialty if possible. Be open to the advice and treatment options. Traditional medicine is OK.

    The side-effects of alternative treatments are the worst: 1. They don’t work, 2. They are a waste of money.

    To put things in perspective and maybe, add a smile to your day… here is something (tongue-in-cheek) that I wrote about alternative treatments for ALS: Auntie A. Ellis Gets Cured

    Keep asking us your questions, together we can support each other 🙂 Dagmar

     

  • Mary

    Member
    May 13, 2019 at 1:53 pm

    Thankyou dagmar, that is so funny reminds me of me with the coconut can’t bear the taste really ?I am glad to have found this forum thankyou

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