Announcement

Collapse
No announcement yet.

Intro and question: has anyone tried ursolic acid?

Collapse
X
Collapse
 
  • Page of 1
  • Filter
  • Time
  • Show
Clear All
new posts
Previous template Next
    #1

    Intro and question: has anyone tried ursolic acid?

    Hi - I am a 67 yr old woman, live in large metropolitan area, East Coast of U.S. I was diagnosed with clinically isolated demyelination syndrome just over 3 yrs ago. So far, it has in fact been just the one demyelination event and the symptoms have remained the same since the start, though they sometimes increase in severity. I have pain around my ribs at the bra-band line, 24/7, both feet are numb (the right more than the left), my right leg is unstable, I have balance problems, and bladder problems. I've got a great neurologist who specializes in neuromyelopathy. I have been to 3 pain management specialists; I tried Scrambler Therapy (Calmare). It worked for a little bit.

    I took n-acetylglucosamine for nearly 2 years but if it made any difference, I couldn't tell and my MRIs were unchanged from the initial MRIs in terms of the size and location of the two spinal lesions. I have also been taking Solafenicin (Vesicare) for nearly two years for the bladder problems. It is also supposed to promote myelin regeneration but again, so far nothing.

    Now I am going to try ursolic acid, based on this one study: https://www.pnas.org/doi/10.1073/pnas.2000208117

    I am wondering if anyone else here has tried it and if so, any results?

    Thanks!
    Tags: None
    • Likes 1
    #2
    Welcome to MSWorld.

    I am a 61 y.o. female. I've had MS since 2002 and am currently in SPMS (Secondary Progressive MS).

    Regularly, I take:
    - Vitamin D3 and K2
    - Probiotics
    - Magnesium / calcium

    I see a kinesiologist regularly, who does muscle testing, to determine which supplements will best support my body's needs. So, I take other supplements, too, but they change regularly, based on what my body needs at the time. I've used NAC sometimes, but not the other two that you mention.

    My functional medicine doctor, through blood tests, has determined that I need hormones (estrogen and progesterone). I also use LDN (low dose naltrexone), which has been shown to be useful for some people with auto-immune diseases. Those are the only meds I am on.

    I encourage you to consider seeing a functional medicine doctor to supplement your traditional health care. They focus on treating patients through uncovering the hidden, underlying causes of conditions and illnesses, instead of just treating the symptoms with medications. Treatment generally involves dietary changes and other lifestyle changes. These changes have altered the course of my disease from consistently progressing to now remaining stable.

    Best wishes!​
    ~ Faith
    MSWorld Volunteer -- Moderator since JUN2012
    (now a Mimibug)

    Symptoms began in JAN02
    - Dx with RRMS in OCT03, following 21 months of limbo, ruling out lots of other dx, and some "probable stroke" and "probable CNS" dx for awhile.
    - In 2008, I was back in limbo briefly, then re-dx w/ MS: JUL08    .
    - Betaseron NOV03-AUG08; Copaxone20 SEPT08-APR15; Copaxone40 APR15-present
    - Began receiving SSDI / LTD NOV08. Not employed. I volunteer in my church and community.
    • Likes 1

    Comment

      #3
      Hi MakeItGoAway. An interesting report/study. If you get some and try it please let us know how it goes. I read a CBC news report about research in Toronto , about training other cells in our body to become myelin making ones. They were applying for 15 million to do the studies. I wished I knew how to put it here so people can read about it
      I just worry about scar tissue that can’t heal but who knows.
      It was one agains't 2.5million toughest one we ever fought.
      • Likes 1

      Comment

        #4
        Thank you, Faith,

        I am taking D3, magnesium citrate, alpha lipoic acid, acetyl L-carnitine, B12, melatonin, and now the ursolic acid.

        For the pain, I tried LDN. Nothing. Didn't help at all. Likewise oral THC, THC cream, gabapentin (oral and cream). I honestly can't remember all the things I tried for the pain, including physical therapy (did nothing) and accupuncture (made it worse - took me 3 weeks to recover from that pain). Rx strength lidocaine. Sometimes, Salon Pas (the gel form) works.

        My diet is super-healthy. Lots of fiber, protein, good fats, veg of every color in the rainbow, very low in added sugars. I fast 2 days/week and 4x per year, I do a five-day fast.

        The CIDS is the only health problem I have. It is very frustrating because it started just when I retired and all the stress vanished and I was looking forward to really enjoying life.

        It is very depressing to think that I am going to be in pain every day for the rest of my life. And have diminished energy. I am stubborn and I keep trying to push through the fatigue, which just makes it worse. I have a good day and I overdo it, and then I have two days of exhaustion. I know I have to pace myself but I was such an energetic person and used to getting everything done. It is very frustrating to have it take a whole week to clean my house (I actually enjoy housework and love having a clean house).




        Comment

          #5
          A functional medicine doctor would likely add gluten free and dairy free protocols to your healthy diet. They were a game changer for me.

          You could also consider reading The Walks Protocol by Dr Terry Wahls.
          ~ Faith
          MSWorld Volunteer -- Moderator since JUN2012
          (now a Mimibug)

          Symptoms began in JAN02
          - Dx with RRMS in OCT03, following 21 months of limbo, ruling out lots of other dx, and some "probable stroke" and "probable CNS" dx for awhile.
          - In 2008, I was back in limbo briefly, then re-dx w/ MS: JUL08          .
          - Betaseron NOV03-AUG08; Copaxone20 SEPT08-APR15; Copaxone40 APR15-present
          - Began receiving SSDI / LTD NOV08. Not employed. I volunteer in my church and community.

          Comment

            #6
            Thanks, Oceanpride.

            Ursolic acid is sold OTC. I bought it from Amazon. I will report back for sure.

            I agree that even if the myelin regenerates, the scar tissue is unlikely to diminish, much less go away. I guess the new myelin just forms around it? So not sure if that would really help. But I have to try.

            I think I found the info about the study in Toronto: https://multiplesclerosisnewstoday.c...-of-the-brain/

            I will look for updates (they may have postponed the start date due to COVID) and if I find any, I will post it here.

            I've read of other promising studies. Problem is that by the time they get through stage 3 clinical trials and FDA (in the US) approval, I'll be a very old lady, if I'm even still alive.
            ​

            Comment

              #7
              Originally posted by Mamabug View Post
              A functional medicine doctor would likely add gluten free and dairy free protocols to your healthy diet. They were a game changer for me.

              You could also consider reading The Walks Protocol by Dr Terry Wahls.
              Hi, Mamabug,

              I eat very little dairy. Just yoghurt. I don't avoid gluten but most of the foods I eat have little or no gluten. I avoid highly processed foods. I have read Terry Wahl's book. My view is that some things work for some people, other things work for other people, and if something works for you, great, go for it. Just be sure to check out any potential side-effects and always consult your doctor first.

              Comment

                #8
                Originally posted by MakeItGoAway View Post

                ... if something works for you, great, go for it. Just be sure to check out any potential side-effects and always consult your doctor first.
                Yes, it works well for me. It absolutely stopped my progression. And, yes, I've consulted my doctor.

                I hope you can find something that works for you. I continue to recommend a functional medicine doctor. I currently see my traditional PCP, who has some kind of certification in nutrition, a functional medicine MD, and a functional medicine neurologist. I believe that I benefit from all three.

                - Faith

                ~ Faith
                MSWorld Volunteer -- Moderator since JUN2012
                (now a Mimibug)

                Symptoms began in JAN02
                - Dx with RRMS in OCT03, following 21 months of limbo, ruling out lots of other dx, and some "probable stroke" and "probable CNS" dx for awhile.
                - In 2008, I was back in limbo briefly, then re-dx w/ MS: JUL08                .
                - Betaseron NOV03-AUG08; Copaxone20 SEPT08-APR15; Copaxone40 APR15-present
                - Began receiving SSDI / LTD NOV08. Not employed. I volunteer in my church and community.

                Comment

                  #9
                  Originally posted by MakeItGoAway View Post
                  Thanks, Oceanpride.

                  Ursolic acid is sold OTC. I bought it from Amazon. I will report back for sure.

                  I agree that even if the myelin regenerates, the scar tissue is unlikely to diminish, much less go away. I guess the new myelin just forms around it? So not sure if that would really help. But I have to try.

                  I think I found the info about the study in Toronto: https://multiplesclerosisnewstoday.c...-of-the-brain/

                  I will look for updates (they may have postponed the start date due to COVID) and if I find any, I will post it here.

                  I've read of other promising studies. Problem is that by the time they get through stage 3 clinical trials and FDA (in the US) approval, I'll be a very old lady, if I'm even still alive.
                  ​
                  Yes that was it ! The article I read was a little different but the same thing. I’m almost 65 now and am in the same boat. Hopefully the ursolic acid will help. It looked safe enough. I did an MRI about a month ago and have heard nothing back. Probably didn’t look good is my guess. Please let me know how you do on that stuff. We just need a little help till something better comes along. Good luck
                  It was one agains't 2.5million toughest one we ever fought.

                  Comment

                    #10
                    Originally posted by oceanpride View Post

                    Yes that was it ! The article I read was a little different but the same thing. I’m almost 65 now and am in the same boat. Hopefully the ursolic acid will help. It looked safe enough. I did an MRI about a month ago and have heard nothing back. Probably didn’t look good is my guess. Please let me know how you do on that stuff. We just need a little help till something better comes along. Good luck
                    Wow. You had an MRI 4 weeks ago and your neuro hasn't contacted you yet? NOT GOOD! My neuro is at a major teaching hospital and we mostly communicate via MyChart. He gets back to me on test results within a day or two. The results are posted so fast that they are usually on MyChart by the time I get home (I live an hour away from the hospital). So I have already seen them by the time the neuro contacts me and I am ready with any questions I might have.

                    Good luck to all of us!

                    Comment

                      #11
                      Originally posted by oceanpride View Post
                      Hi MakeItGoAway. An interesting report/study. If you get some and try it please let us know how it goes. I read a CBC news report about research in Toronto , about training other cells in our body to become myelin making ones. They were applying for 15 million to do the studies. I wished I knew how to put it here so people can read about it
                      I just worry about scar tissue that can’t heal but who knows.
                      Look what I just found! https://www.uclahealth.org/news/spin...ntional-wisdom

                      Comment

                        #12
                        That is encouraging for us.
                        Thanks for your research on this.
                        There is defiantly some brilliant minds working on this stuff !
                        It was one agains't 2.5million toughest one we ever fought.

                        Comment

                        Previous template Next
                        Working...
                        X