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    Any ppms help?

    Is there anything ANYTHING that has helped anyone with ppms? I'm willing to try almost anything

    #2
    I'm sorry you have ppms.

    My neuro has told my husband and myself there are no treatments for ppms, only meds to control the effects of progression (urologic, spasms, vertigo, weakness, fatigue).

    My husband went from cane to fulltime wheelchair (and now needing 24/7 care) in about 14 years. Some people progress faster than that, some still don't need anything but a cane after 25 years.

    My heart goes out to you. You have to be tough to survive with this disease. My husband's fighting attitude has probably helped more than anything.

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      #3
      Unfortunately, just symptom management.

      There are some clinical trials underway right now but we are probably looking at a few years.

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        #4
        Try looking into the Dr. Welsh diet I'm not saying it will work but maybe it will help. I haven't personally tried the her diet yet but have done some research into it.

        Cheers
        Jason

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          #5
          There are no treatments that have been shown to affect PPMS. But you can change your body chemistry by what you eat to try to make it easier for your body to deal with the effects of MS.

          What we eat can affect which of our genes turn on and off. And it isn't just what we eat, it also has a lot to do with what we don't eat. The "don't eat" food are the ones that are usually the "comfort foods". And a lot of people figure that as long as they have to deal with this miserable disease, they want to treat themselves with those bad foods to try to soothe themselves and make themselves comfortable. They think that as long as they have an incurable disease, they might as well make themselves feel as good as possible.

          Except that those comfort foods might themselves be contributing to how bad somebody feels. Eliminating them might take some of the burden off of a body already dealing with MS.

          So it might make sense to try adopting a strict eating plan. The Wahls diet is one of them. There is currently an ongoing clinical trial of the effects of the Wahls diet and a derivative on progressive forms of MS.

          So if you are willing to try almost anything, you could try a diet with no sugar or simple carbohydrates and no gluten, and as much fresh, unprocessed plant based food as possible. The harmful effects of gluten and simple carbohydrates have been talked about by many, many health professionals, most of whom are not MS specialists. Those substances aren't just bad for you because you have MS, they're bad because you have a body and bodies don't process them well.

          Feeding your body foods that are bad for it can't possibly be helping in your struggle to deal with MS. So if you really want to try almost anything, you can try adjusting your diet. There's a lot of proof that it makes a difference to your body's overall functioning and can turn off the genes that lead to other diseases. And a healthy body will do better with MS than a sick, poorly fed one.

          You can look into the Wahls diet, gluten free. And you might also benefit from reading the book Grain Brain, which was written by Dr. David Perlmutter, a neurologist.

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            #6
            Low Dose Naltrexone (LDN)...

            A pilot trial of low-dose naltrexone in primary progressive multiple sclerosis.

            A sixth month phase II multicenter-pilot trial with a low dose of the opiate antagonist Naltrexone (LDN) has been carried out in 40 patients with primary progressive multiple sclerosis (PPMS). The primary end points were safety and tolerability. Secondary outcomes were efficacy on spasticity, pain, fatigue, depression, and quality of life. Clinical and biochemical evaluations were serially performed. Protein concentration of beta-endorphins (BE) and mRNA levels and allelic variants of the mu-opiod receptor gene (OPRM1) were analyzed. Five dropouts and two major adverse events occurred. The remaining adverse events did not interfere with daily living. Neurological disability progressed in only one patient. A significant reduction of spasticity was measured at the end of the trial. BE concentration increased during the trial, but no association was found between OPRM1 variants and improvement of spasticity. Our data clearly indicate that LDN is safe and well tolerated in patients with PPMS.

            https://www.ncbi.nlm.nih.gov/pubmed/18728058

            ...and Alpha Lipoic Acid (ALA):

            Lipoic Acid for Secondary Progressive Multiple Sclerosis (MS)


            The purpose of the study is to determine if lipoic acid can protect the brain and slow disability in secondary progressive multiple sclerosis.

            http://clinicaltrials.gov/ct2/show/NCT01188811

            LDN is an off-label use of the drug Naltrexone that is made under prescription in a compounding pharmacy and costs about $30 a month. It's a pill you take before bedtime at a dose of 4.5mg and it's therapeutic action is to generate endorphins that regulate immune system function.

            ALA is an antioxident supplement that prevents Tcell attacks on myelin.

            (Google: alpha lipoic acid multiple sclerosis and see the "Useful LDN Information" thread on the Medications Forum)

            You take about 300mg ALA three-to-four times a day.

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              #7
              I have PPMS and my Nuero is treating me with CellCept (immunosuppressant) to try and slow progression. I take 1000mg twice a day. To me it does seem to help slow things down. I have been on this for a little over 2 years now.
              Dennis

              The soul of a song will lift your spirits.

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