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    • #19057
      SILVIA ARG
      Participant

      Please, tell me what are you using, together RILUZOLE

    • #19438
      john s
      Participant

      Hi Silvia,

      Sorry nobody picked up on this sooner. There are many different things people take for ALS. A person can spend hours and hours just researching this topic. I am a slow progression and Riluzole is not a good choice for me. I am on Radicava though. These are the only 2 meds our doctors can prescribe at this time. It is always smart to talk to your doctor before taking anything else.

      I started taking lion’s mane mushrooms as a supplement because it stimulates nerve growth. I also take a cordyceps mushroom supplement because it helps the immune system. I have to be cautious with cordyceps because I am diabetic, and it helps lower blood glucose. I also take magnesium supplements because if I do not my cramps get severe.

      “ALSuntangled dot com” gives a lot of info on other options you may find interesting.

    • #19442
      Amanda
      Keymaster

      Like John mentioned, please be sure to talk to you doctor about any kind of supplements before starting them.  There are all kinds of theories and suggestions and you need to be very careful.

    • #19459
      SILVIA ARG
      Participant

      Thank you for your opinions. And what about antioxidants? I use vitamin C (2g), vit E (1 g) and niacina (25 mg) each day.

    • #19462
      john s
      Participant

      ALS Untangled has a section “Completed Reviews” you may find the answers in. You might also try to source studies on the NIH website (NIH. GOV).

       

      Try removing the space to link.

       

       

      http s://s earch.nih.gov/search?affiliate=hip&query=ALS+and+antioxidants

    • #19468
      Duane
      Participant

      I wish the good Dr. Bedlack would change the name of it since it “untangles” nothing. Unfortunately human studies are lacking on many of these substances and while they may be in general safe, there is always a possibility of an adverse reaction in certain individuals.

    • #19474
      Elizabeth Pacheco
      Participant

      we all look to supplements to relieve our symptoms and hope that they can somehow slow down progression. I see a Dr. that also practices alternative medicine. Under her suggestion I take B complex, alpha lipoic acid, vitamin C  a d Mag very important and on my own I take Tudca. It’s one of the ingredients in Amx 0035 so why not? 

    • #19475
      Paul Tavano
      Participant

      I have a very slow progression of ALS. First diagnoses in 2009 and have lost very little function. I take riluzole along with vitamin B12, C, D3, E, beta carotene, folic acid, magnesium and melatonin. Most of the vitamins were recommended to me from An ALS research doctor. Not sure if any of it helps but doesn’t hurt.

    • #19483
      Bill
      Participant

      I also am slow progression. I do not take either Riluzole orRadicava. My Drs didn’t feel either would do anything in my case. I do take Theracurmin, B12,  magnesium, fish oil and multivitamin. I was borderline low in B12.  No a clue if any of it helps. I do believe the Theracurmin makes me feel less pain in my spine and joints although I don’t think does anything for my ALS.

    • #19484
      Mike Minardi
      Participant

      Here are a list of meds / supplements my wife takes in addition to Riluzole. Her neurologist has prescribed a number of these and she is also fortunate to be part of the MGH / Healey Center expanded access program.

      Sodium Phenylbutyrate + Tudca – SP has to be prescribed and is not covered by insurance and Tudca can be purchased on Amazon
      Metformin – prescription
      Mexilitine – prescription
      Neudexta – prescription
      Baricitinib (Olumiant) – prescription
      Acteyl L Carnitine – OTC – Amazon
      Elysium Basis – OTC Supplement
      Theracurmin – OTC Supplement
      RNS60 from Revalesio – Expanded Access Program

      As others have stated, please confer with your neurologist. If you want more information, please send me a note.

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