Announcement

Collapse
No announcement yet.

Atrophy and an uncertain future

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

    #31
    Originally posted by rdmc View Post
    My neuro didn't discuss prognosis even though there were signs of prognosis (I'm SPMS.) But I didn't really expect him to because my MRIs were relatively stable. Marc at Wheelchair Kamikaze
    has a spectacular post about his MRI being stable yet his progression was relentless misdiagnosis-of-multiple-sclerosis-and.html.

    Now that I've developed neuromuscularscoliosis there are much more specific. I don't think it's because they have more information of the multiple scelrosis, but of neuromuscular scoliosis.
    Ahhhh Marc what a great reminder. For any of the newbies a must google!
    He is your friend, your partner, your defender, your dog. You are his life, his love, his leader. He will be yours, faithful and true to the last beat of his heart. You owe it to him to be worthy of such devotion.
    Anonymous

    Comment


      #32
      [QUOTE=Myoak;1517430]No, this is not fake news at all. The peer-reviewed science is below.

      Keep in mind this trial was small, nevertheless, we should in no way diminish the significance of it.
      .....

      Yes, I am taking 600mg of ALA two times a day. But is it enough? The problem is that in studies is used 1200mg of Lipoic acid, not ALA. And there is a difference. ALA is not exactly the Lipoic acid.
      ALA contains approximately 50% of R-ALA (bilogically active) and 50% of S-ALA (useless for human).

      Comment


        #33
        [QUOTE=PeterX;1517446]
        Originally posted by Myoak View Post
        No, this is not fake news at all. The peer-reviewed science is below.

        Keep in mind this trial was small, nevertheless, we should in no way diminish the significance of it.
        .....

        Yes, I am taking 600mg of ALA two times a day. But is it enough? The problem is that in studies is used 1200mg of Lipoic acid, not ALA. And there is a difference. ALA is not exactly the Lipoic acid.
        ALA contains approximately 50% of R-ALA (bilogically active) and 50% of S-ALA (useless for human).
        Peter, really great post with excellent points!

        Here is my take…
        One of the best ALA (alpha lipoic acid) or LA (lipoic acid) products available, IMO, is ThioGel-L.

        THIOGEL is European solubilized alpha lipoic acid. It comes in 200mg gelcaps and costs about $35 for 60 caps. The absorption rate is superior to that of oral powder.
        The trial listed states they used gelatin capsules supplied by Pure Encapsulations. That company is online are online and their R-LA is about 72 cents each per 100mg cap. Their 600mg ALA is priced at $52 for 60 caps of 600mg. I do not know which form the trial used.

        JMHO, but I bet the trial used the 600mg ALA caps just like you can buy on Amazon from that company. It is extremely unlikely, in my view, that the company formulated 600mg R-LA just for one small trial. Possible, but highly improbable, IMO. Obviously, they have very high-quality products worth considering.

        Oddly, their website states they only sell their products through healthcare professionals but I just purchased their 600mg capsules on Amazon to check them out myself. What I don’t know about them is where they source their ALA.

        Dr. Berkson, the FDA’s principal investigator for intravenous alpha lipoic acid, has expressed very serious reservations about cheap ALA from China vs high-quality ALA from Europe because of his experiences involving each. Berkson personally told me of doctors calling him saying the ALA treatment was having no effect and asking his counsel. He suggested they have the ALA they were using analyzed.

        The results were shocking. Product traced back to China was all over the place in purity with great variance in how much ALA was even in it. Berkson related all that to me in conversation at his practice in New Mexico. However, the European ALA was rock solid. Berkson will use nothing but European ALA, I do know that.

        Berkson refuses to recommend brands of ALA or R-LA. He just won’t get drawn into the arguments. However, face to face, he has told me that he has confidence in ThioGel.
        Sure, you may get decent product from China, but you may not, also. And if you don’t then it wasn’t inexpensive.

        I take ALA because that is what Berkson recommended. ALA is comprised of both R-LA and S-LA. Is R-LA the only part we need or want? I don’t know. For now, I’ll stick with guidance furnished by the FDA’s principal investigator who has 40 years clinical practice.

        Thank you, Peter, for highlighting something which may truly help. Also, if you go to ThioGel’s website they will send you a bottle entirely free, no strings at all. I’m not sure taking it for 10, 20, or 30 days is long enough to see a difference but I’m not sure we see tangible results easily, anyway.

        I believe there is abundant science and clinical experience warranting me taking ALA, therefore I do, and I have for several years.

        Last, if you take a ALA product which results in a strong urine odor, that is a good sign according to Berkson.

        Comment


          #34
          There is another fairly conclusive study stating a correlation between low/normal BMI and lower decrease in Brain Mass.

          BMI stands for Body Mass Index. Obesity is something that may be controlled by the patient. Losing weight or keeping weight down is certainly harder for some with MS, depending on disability and access to exercise. But still it is something that could be within our individual control.

          https://msworld.org/forum/showthread...nce-Brain-Mass
          All the best, ~G

          Comment


            #35
            Originally posted by gargantua View Post
            There is another fairly conclusive study stating a correlation between low/normal BMI and lower decrease in Brain Mass.
            This is the sort of research makes me doubt I can do anything about my brain volume loss at all! My BMI is 23, exactly where I want it. I studied math, science, and language (Latin, no less) in college; learned to play the violin at 40; Soduko, of course. Quit smoking 30 years ago. Hate alcohol. I have always exercised to some degree.

            You know what I think saved me from disability so far? My head size. My intercranial volume, measured by the atrophy software, is at the very high end of normal. That is, how much room I have in my skull for brain, and presumably how much used to be there.

            Hats have always been too tight. So even with brain loss, my remaining brain volume is about normal. Maybe if I just slow down the atrophy now, I'll have a perfectly normal old age. But I'm not sure how much anyone can slow brain loss at 57. I know none of this probably makes any sense, or is even close to true. I'm just so whacked out right now...

            Comment


              #36
              [QUOTE=Myoak;1517466]
              Originally posted by PeterX View Post

              Peter, really great post with excellent points!

              Here is my take…
              One of the best ALA (alpha lipoic acid) or LA (lipoic acid) products available, IMO, is ThioGel-L.

              THIOGEL is European solubilized alpha lipoic acid. It comes in 200mg gelcaps and costs about $35 for 60 caps. The absorption rate is superior to that of oral powder.
              The trial listed states they used gelatin capsules supplied by Pure Encapsulations. That company is online are online and their R-LA is about 72 cents each per 100mg cap. Their 600mg ALA is priced at $52 for 60 caps of 600mg. I do not know which form the trial used.

              JMHO, but I bet the trial used the 600mg ALA caps just like you can buy on Amazon from that company. It is extremely unlikely, in my view, that the company formulated 600mg R-LA just for one small trial. Possible, but highly improbable, IMO. Obviously, they have very high-quality products worth considering.

              Oddly, their website states they only sell their products through healthcare professionals but I just purchased their 600mg capsules on Amazon to check them out myself. What I don’t know about them is where they source their ALA.

              Dr. Berkson, the FDA’s principal investigator for intravenous alpha lipoic acid, has expressed very serious reservations about cheap ALA from China vs high-quality ALA from Europe because of his experiences involving each. Berkson personally told me of doctors calling him saying the ALA treatment was having no effect and asking his counsel. He suggested they have the ALA they were using analyzed.

              The results were shocking. Product traced back to China was all over the place in purity with great variance in how much ALA was even in it. Berkson related all that to me in conversation at his practice in New Mexico. However, the European ALA was rock solid. Berkson will use nothing but European ALA, I do know that.

              Berkson refuses to recommend brands of ALA or R-LA. He just won’t get drawn into the arguments. However, face to face, he has told me that he has confidence in ThioGel.
              Sure, you may get decent product from China, but you may not, also. And if you don’t then it wasn’t inexpensive.

              I take ALA because that is what Berkson recommended. ALA is comprised of both R-LA and S-LA. Is R-LA the only part we need or want? I don’t know. For now, I’ll stick with guidance furnished by the FDA’s principal investigator who has 40 years clinical practice.

              Thank you, Peter, for highlighting something which may truly help. Also, if you go to ThioGel’s website they will send you a bottle entirely free, no strings at all. I’m not sure taking it for 10, 20, or 30 days is long enough to see a difference but I’m not sure we see tangible results easily, anyway.

              I believe there is abundant science and clinical experience warranting me taking ALA, therefore I do, and I have for several years.

              Last, if you take a ALA product which results in a strong urine odor, that is a good sign according to Berkson.

              Dear Myoak, in fact my ALA is from US company called Swanson. I am buying ALA via Slovak branch of Swanson. If your last claim is true, then this ALA is good enough, because my urine smell is strong since when I was starting taking ALA. I hope, such investigator from FDA have checked this ALA and it is ok.
              For now I am satisfied with my ALA, but I store in my mind ThioGel company for case of getting doubts.
              Thank you very much for your post, I was pleased reading your informations.

              Comment


                #37
                Originally posted by Mable View Post
                This is the sort of research makes me doubt I can do anything about my brain volume loss at all! My BMI is 23, exactly where I want it. I studied math, science, and language (Latin, no less) in college; learned to play the violin at 40; Soduko, of course. Quit smoking 30 years ago. Hate alcohol. I have always exercised to some degree.

                You know what I think saved me from disability so far? My head size. My intercranial volume, measured by the atrophy software, is at the very high end of normal. That is, how much room I have in my skull for brain, and presumably how much used to be there.

                Hats have always been too tight. So even with brain loss, my remaining brain volume is about normal. Maybe if I just slow down the atrophy now, I'll have a perfectly normal old age. But I'm not sure how much anyone can slow brain loss at 57. I know none of this probably makes any sense, or is even close to true. I'm just so whacked out right now...
                Yeah, I don't think even a conclusive study would say "if you change your BMI, your brain won't get smaller." Because it is also proven that brains will shrink naturally with aging. So let's keep stimulating what we have, every day however we can.
                All the best, ~G

                Comment

                Working...
                X