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  • Alain posted a new activity comment 1 month, 1 week ago

    One thing was published in Lancet is it prevents brain atrophy, something that was noted on my MRI over the last 6 years. we shall know for sure once we have gene guided therapy. Thanks for your interest!
    • Alain posted a new activity comment 1 month, 1 week ago

      I know but its anti-inflammatory effect, has shown it to be effective in SPMS. It is recommended by the American College of Neurology, off-label.
        • I wasn’t aware of that off-label use, Alain. I wonder if other statin drugs have a similar effect. I’ve used one to control my cholesterol for years.
        • Alain posted a new activity comment 1 month, 2 weeks ago

          The last medication my neurologist suggested was Mayzent, unfortunately, I did not tolerate it. I have been taking Simvastation, which has shown some benefit for SPMS. Otherwise, just Provigil for fatigue, and Baclofen with Ampyra for gait. However, no disease modifying drug. Thanks
            • Alain, Are you sure it’s Simvastatin that’s helping your MS? That’s a cholesterol-reducing drug. I’ve never heard of it being used to treat MS.
                • I know but its anti-inflammatory effect, has shown it to be effective in SPMS. It is recommended by the American College of Neurology, off-label.
                    • I wasn’t aware of that off-label use, Alain. I wonder if other statin drugs have a similar effect. I’ve used one to control my cholesterol for years.
                • Alain posted an update 1 month, 2 weeks ago

                  I am now 63 years old, have been in secondary progressive MS for 2 years. MRI stable no new symptoms but fatigue and activation of old symptoms. No medication, tried Novartis drug for SPMS with too many side-effects. Hoping for new therapy. Unfortunately, I can no longer practice as a cardiologist/ neurologist.

                  • Hey Alain, I’m 62 and can just about manage being a moderator on this site! Congrats sir.
                    • Hi Alain,

                      Welcome. I’m sorry that MS has robbed you of your career as a physician, but I hope you’re looking for other ways to remain in healthcare. I’ll be 72 tomorrow and retired from journalism about 8 years ago. I’m still active writing as a columnist here and authoring an MS book.

                      You know there are more than 20 medications available…

                      [Read more]

                      • The last medication my neurologist suggested was Mayzent, unfortunately, I did not tolerate it. I have been taking Simvastation, which has shown some benefit for SPMS. Otherwise, just Provigil for fatigue, and Baclofen with Ampyra for gait. However, no disease modifying drug. Thanks
                          • Alain, Are you sure it’s Simvastatin that’s helping your MS? That’s a cholesterol-reducing drug. I’ve never heard of it being used to treat MS.
                              • I know but its anti-inflammatory effect, has shown it to be effective in SPMS. It is recommended by the American College of Neurology, off-label.
                                  • I wasn’t aware of that off-label use, Alain. I wonder if other statin drugs have a similar effect. I’ve used one to control my cholesterol for years.
                            • I just answered my own question. I found this on the MS Society’s (U.K.) website:

                              We’re funding research to understand how simvastatin works in secondary progressive MS. Some studies have shown that higher cholesterol levels are linked to more severe MS. So simvastatin might slow progression in MS by reducing cholesterol.

                              But a recent…

                              [Read more]

                              • One thing was published in Lancet is it prevents brain atrophy, something that was noted on my MRI over the last 6 years. we shall know for sure once we have gene guided therapy. Thanks for your interest!
                            • Alain posted a new activity comment 2 months, 1 week ago

                              My question relates to the risk of developing secondary prog MS after 30 years of RRMS, stable MRI imaging for 4 years, no new neurologic symptoms, at initial diagnosis no oligoclonal distribution in spinal tap. Furthermore, only member of my family going back 4 generations to have MS?
                              • Alain became a registered member 2 months, 1 week ago

                                • Hi Alain,
                                  Welcome – loads of info, research & experiences on here.
                                  You can also start topics – my fellow
                                  moderator Ed Tobias explains ‘Posting Items’ at the top of each Forum.
                                  Cheers John
                                  • My question relates to the risk of developing secondary prog MS after 30 years of RRMS, stable MRI imaging for 4 years, no new neurologic symptoms, at initial diagnosis no oligoclonal distribution in spinal tap. Furthermore, only member of my family going back 4 generations to have MS?
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