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    #16
    An interesting ALSuntagled video on the benefits maybe of Curcumin ?
    https://www.neals.org/for-people-wit...her-als-x-file

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      #17
      Thank you TIANDB, I was very interested and watched this presentation. However, I did notice that there are quite a few warnings on the internet about possible side effects when using this supplement. I might still give it a trial myself though.

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        #18
        To be honest I'm just trying to eat healthy rather than rely on herbs , pills and powders - more veg and fish seems to be working a treat.

        Only extra nutrients I have are a generic multi vitamin and I've been experimenting with CBD

        x

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          #19
          Hi jamesob
          I will try whatever to arrest my TO slippery slope and give me some hope otherwise I could have been gone by now.
          Do you get your CBD in the uk ? Or are you in a legalized county ?
          Post up an introduction we will take an interest in your story. Take care Dude TIANDB.

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            #20
            Originally posted by TIANDB View Post
            Hi jamesob
            I will try whatever to arrest my TO slippery slope and give me some hope otherwise I could have been gone by now.
            Do you get your CBD in the uk ? Or are you in a legalized county ?
            Post up an introduction we will take an interest in your story. Take care Dude TIANDB.
            Hi @TIANDB - thanks for making me feel welcome I'm going to leave an intro now

            I'm from the UK - CBD is fully legal here in the UK. I'm from London ( at least I think so?!) because it doesn;t have any THC . I vape for my sins I use a CBD vape oil brand called elevate from here

            I'm not sure what my doctor would say but at the very least it helps with my appetite and getting my mind to a state where Im easily able to switch off and rest before bed....

            Thanks again bro - looking forward to better integrating with the community here and hopefully learning and sharing with you all

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              #21
              hello. concerning cbd oil. here in glastonbury cbd oil is available in the health food shop but only at 10 per cent dilution, it is available in a nother shop , at these percentages.{sorry cant seem to find percenty key on my lappy} 17,18. 28 and 38. all for under 15pounds i think,i assume that the stronger the better. i know a fewe people who take this daily x2, half a pea size on ur finger,under ur tongue and let it slowly dilute, guess it can be taken in a drink but i think its best not to heat it up as this most likely damages some of its properties.... if anyone wants some i will ask the guy in the shop if he does postal orders but they are always super busy as the shop sells other stuff,made fro hemp, clothing, etc etc. if they dont want to post it,i can post it for anyone on here.....jeremy

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                #22
                Originally posted by jeremy middleton mum View Post
                hello. concerning cbd oil. here in glastonbury cbd oil is available in the health food shop but only at 10 per cent dilution, it is available in a nother shop , at these percentages.{sorry cant seem to find percenty key on my lappy} 17,18. 28 and 38. all for under 15pounds i think,i assume that the stronger the better. i know a fewe people who take this daily x2, half a pea size on ur finger,under ur tongue and let it slowly dilute, guess it can be taken in a drink but i think its best not to heat it up as this most likely damages some of its properties.... if anyone wants some i will ask the guy in the shop if he does postal orders but they are always super busy as the shop sells other stuff,made fro hemp, clothing, etc etc. if they dont want to post it,i can post it for anyone on here.....jeremy
                Hey - that sounds really interesting, thanks for taking the time to write that. Do they have a website where I could look at their stuff? I've never seen it as pure oil before

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                  #23
                  I can’t live without my daily iron intake. I bought these powder supplements that you dilute in water, so it’s super convenient to use and the taste is not that bad as well. Iron is amazing for your general health. Personally, I naturally lack iron in my body, so my skin is always dry, my scalp is itchy, and I always have head migraines. These are some common symptoms that tell you the lack of iron in your system. When I work out, I even increase my intake, plus I also add this 4 gauge pre workout supplements to give me a kick. Overall, I have been seeing amazing results so far.
                  Last edited by Lorian; 26 May 2021, 14:22.

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                    #24
                    I do syringe a drink called nutrition but any complete drink will do. 😁🤗😉😍xx
                    Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

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                      #25
                      Blimey! I am so glad i asked for a topic on treatments, medications and supplements - would never have seen these posts otherwise. Loads of memberrs i've not seen anything from before too - i trust all of you are still with us? As this thread started in 2017, i feel very nervous saying that. i am a very fortunate slow progress MNDer.

                      I have been taking cod liver oil, and a vitamin B hi-strength complex - both for many years before diagnosis. I have low bone density, according to 2 different sets of scales, so have been taking chonditrin. About to stop that though. Not seen any benefits from any supplements i have ever taken.

                      I am also permanently on sertraline (anti depressant) having been depressed, on and off, since i was 8, and am now on 2 riluzole a day. The only medication, as i understand it, that is currently proved to have an effect.

                      Phew! That felt like a lot of writing, so i will stop now.
                      Last edited by EvelynMW; 8 June 2021, 20:02.
                      Mum died with MND in 1979 – I have a wonky gene, probably inherited from her. Reckon mine started sometime in 2018

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                        #26
                        EvelynMW I know you're taking B-complex, but that probably doesn't contain much B12, nor in the correct form.

                        I take sublingual B12 methylcobalamin daily - that's the best tablet form available. I am vegetarian, so have taken B12 for years but my GP told me to take that form after my diagnosis, as it's good for nerve health. xx

                        ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                        Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

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                          #27
                          Ellie Thank you. Will look up B12. Also very interested in the CBD oil - seems to be all the rage now! But no idea if it works in any way. The B complex i take has 2.5 micrograms of b12, which is given as 100% of NRV - and is 0.1 micro grams more than the highest Referenced intake across several countries.

                          I wish any of the supplements i have taken over the years had shown me that they work!

                          We at least know vitamin B, Biotin and cod liver oil stop our dog getting fungal nail!
                          Last edited by EvelynMW; 8 June 2021, 20:12.
                          Mum died with MND in 1979 – I have a wonky gene, probably inherited from her. Reckon mine started sometime in 2018

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                            #28
                            EvelynMW i been taking cbd for a while now and I know when I haven’t had it ie cramps and stiffness
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                              #29
                              The B12 in B complex tabs is in a different form, cyanobalamin as opposed to methylcobalamin.

                              Do some research next time you're bored. 😁
                              ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                              Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

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                                #30
                                Research underway... Ordered myself something from Healthspan (a company i trust) but can't remember what!!!
                                Mum died with MND in 1979 – I have a wonky gene, probably inherited from her. Reckon mine started sometime in 2018

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