@Susanna 

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Susanna

ECTRIMS 2019

ECTRIMS 2019 is around the corner As I will be supporting the shift.ms team as an MS reporter in Stockholm, I wanted to know: Do you have any questions for the experts in Multiple Sclerosis ? Drop them here as we would love to hear from you! :)
@KeepSmyelin99

Hi @susanna 👋🏻 Best of luck in Stockholm! 🇸🇪 I’d be interested to know: 1) Could there be any link between MS and the genetic mutation/gene associated with ginger hair? 👩‍🦰 2) Could we learn more about MS relapse/attack triggers by looking at geographical areas of high incidence and doing a “census” of viruses? 🦠 3) Could we learn about past treatments and possible advances in MS treatment by looking back to history? For example; natural remedies, accounts of witchcraft and witch doctor practice? Just a few thoughts I’ve had recently. And even if there is no definitive answer or educated guess, it’d be good to just know an opinion from the experts 😊 Thank you ☺️

@ItsMewithMS

A couple of strange things about MS and treatment from the perspective of a cost accountant ;-) Many years ago I had a relapse and as they didn't find an active lesion in my brain they looked further and found one on my spine. Apparently these also happen and a spine lesion is much more serious (apparently) than one in the brain. It is also a sign that I don't actually have MS at all but another disease that has lesions and the drug I had been taking (copaxone) wouldn't be effective for that at all. I was like "say what"? I've been sticking myself with a needle and taking this drug all this time with all it's side effects and hassle for years and now you say I maybe shouldn't have been taking it at all? I was sent to a clinic for a simple blood test that ruled out that other disease and told "you definitely have MS and we will continue the current treatment". I couldn't believe that insurance would agree to pay the exorbitant rates for these drugs if this blood test isn't done to rule out other possible diseases. So if there are ways, as simple as a blood test, to rule out other diseases why aren't they done before we subject ourselves to these drugs and our insurance companies pay for them. The other question is somewhat related. I am in my mid 50's. Apparently this is the time when RRMS may transition to SPMS. When I make this transition is quite a mystery. There aren't any definitive definition or sign that I have changed like there is with say like menopause. But when I have moved over to SPMS I should change my treatment plan. Why isn't it better defined when this change should be made? why wouldn't insurance companies care that the treatment they are paying for is effective? Why aren't Drs able to test to know the best treatment? and extending this question why aren't there tests to know which of the available treatment is best for a specific individual? That's my rant ;-0