Jul 5, 2021Liked by Gavin Giovannoni

Prof G, you have emphasized many times MS is inflammatory from beginning to end and neurodegenerative from beginning to end. In other words there is no such thing as truly “inactive” MS. Therefore how can you ethically justify ever not putting someone with MS on a DMT? Aren’t you basically saying you’re OK with your “inactive” patients sustaining more brain damage than necessary simply because the DMT won’t have as much impact for them as for “active” patients? People with cancer are regularly given expensive drugs or treatments that extend life by only a few years or even a few months, why wouldn’t we apply the same thinking to saving brain in MS?

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Jul 3, 2021Liked by Gavin Giovannoni

Another interesting article, thank you. I am 64 and recently had a contrast mri to see if my ms was active. It isn’t but when I asked does that mean it will never reactivate, the answer was almost certainly not.

I didn’t get diagnosed until I was 53 and had no problems until I was 62 and this article has helped me understand why my disability is getting progressively worse.

I was struck down with Ramsay Hunt at 62 syndrome and think the Tecfidera had possibly suppressed my immune system and from that time I’ve really noticed a physical decline. I’m now off the DMT.

Thanks for helping us all understand this awful disease!

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At what point do you think that it’s too late to benefit from lemtrada? Walking is hard and definitely painful. You could easily tell that something is wrong with me because I stagger and have no balance. I couldn’t run if my life depended on it.

I don’t use a wheelchair, walker, or cane regularly but did need to use a wheelchair in the airport. My last definite relapse was about 10 months ago. I have had too many lesions to count since I was diagnosed.

My neurologist looked at my last MRI with me and she thinks that many of them intertwine together. That for quite a few of them, it’s really impossible to tell if you’re looking at 1 very large lesion or 9 smaller ones that are so close that you can’t see the space between them.

Have you had patients like me? If so, would you think that there’s any chance that lemtrada could be worth starting? Thank you so much for everything that you do.

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This worries me too! I am virtually the same as above but since 2008 I think but it is still a worry that something is building about to pounce !

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Similar to Lynn - same age - slowly deteriorating SPMS, but never had a DMT. Recently requested Siponmod...in your view is it better to not have inflammation and not be eligible or to be eligible and take Siponimod? If it's possible to say!

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Thanks Prof G, can you explain what T2 lesions and enhancing lesions are, are there other types of lesion in MS that pwMS might experience and what do they indicate in terms of disease severity, prognosis and symptoms? Thank you

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