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1 week ago | 
gavingiovannoni.substack.com | Gavin Giovannoni
I am a 54-year-old woman and have been living with relapsing MS since 1995, initially presenting as optic neuritis. It took 12 years before I was formally diagnosed in 2007, at which point I started interferon-beta-1a (Avonex). Over the years, I experienced two or three minor relapses (sensory symptoms) that, until 2018, had minimal impact on my daily life.
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1 week ago | 
gavingiovannoni.substack.com | Gavin Giovannoni
I have been promoting the holistic management of multiple sclerosis using the marginal gains framework for over a decade. The principles are simple: do anything you can to change small things that, when added together, make a significant difference to MS outcomes. A core strategy is adopting a brain-healthy lifestyle to prevent or aggressively treat comorbidities that affect brain health. What surprises me is how few MS (pwMS) people take this on board.
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1 week ago | 
gavingiovannoni.substack.com | Gavin Giovannoni
Dear Professor,Life has a way of throwing unfortunate coincidences at us. I am writing to discuss the recent case of a close friend. She is a 40-year-old female currently under observation for suspected demyelinating disease, with a differential diagnosis between Radiologically Isolated Syndrome (RIS) and early Relapsing-Remitting Multiple Sclerosis (RRMS). She is asymptomatic.
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2 weeks ago | 
gavingiovannoni.substack.com | Gavin Giovannoni
A short newsletter to highlight news. The tolebritinib data has finally been published and not only vindicates that BTK (Bruton Tyrosine Kinase) is a valid therapeutic target targeting B-cells and likely CNS macrophages and microglia but also makes the case for CNS penetrant therapies. The tolebrutinib results are a landmark in MS drug development and usher in a new phase of MS therapeutics that goes beyond targeting relapses and focal MRI activity to target smouldering MS. I hope Prof.
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2 weeks ago | 
gavingiovannoni.substack.com | Gavin Giovannoni
I am on holiday with my wife in Bali, a small island in the South of the Indonesian archipelago. It is my first trip to Indonesia; it is beautiful, and the people are so welcoming. The culture is fascinating and very rich with otherworldly traditions and rituals. This also explains why I have not addressed many of the questions in my inbox from subscribers. Earlier this week, we met a young woman from the UK who is living and working in Bali as a digital nomad.
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3 weeks ago | 
gavingiovannoni.substack.com | Gavin Giovannoni
I am a woman in my early 40s who was diagnosed with RRMS in 2018 after a relapse where I experienced numbness in my right leg. Back in 2015, I suddenly lost the ability to walk normally on my left leg, which was unfortunately misdiagnosed as a hip injury. I still have residual symptoms from that relapse and can only walk a maximum of 3 km. In my family, we are three siblings, all of whom have MS.
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4 weeks ago | 
gavingiovannoni.substack.com | Gavin Giovannoni
I am a 44-year-old woman with longstanding MS. I was initially treated with interferon-beta (Avonex) for several years, but I stopped to have a family. I never restarted treatment and have not been on any DMT for over 15 years. I have had no relapses, but I am steadily getting worse. Reduced walking distance, fatiguable foot drop, poor balance and worsening bladder symptoms. My neurologist has suggested either cladribine or siponimod. What would you recommend?
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1 month ago | 
gavingiovannoni.substack.com | Gavin Giovannoni
Do we need to challenge the dogma that traditional MRI is good enough to monitor MS? Our current treatment target in MS is no evident inflammatory disease activity or NEIDA. In other words, there should be no relapses or focal MRI activity (new or expanding T2 lesions or Gd-enhancing T1 lesions). Question: Is the NEIDA treatment target appropriate? I don’t think so for several reasons. If you have MS, you are likely to attribute new neurological symptoms, particularly if they persist, to a relapse.
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1 month ago | 
gavingiovannoni.substack.com | Gavin Giovannoni
I have multiple sclerosis and restless legs syndrome. My neurologist started me on low-dose pramipexole for restless leg syndrome. I started on the lowest dose of 0.088mg dose at night, but over the last few years, I have had to increase the dose to control my restless legs. I am now taking three 0.35mg tablets at night, which controls my symptoms very well and gives me a good night's sleep.
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1 month ago | 
gavingiovannoni.substack.com | Gavin Giovannoni
I was diagnosed with MS in Feb 2015 at the age of 42. I took glatiramer acetate (Copaxone) for more than 4 years until I had a bad relapse with very high MRI activity (incl. black holes) in Nov 2019. Upon recommendation of my Neurologist, I then switched to Natalizumab (Tysabri) in Feb 2020, first did infusions and subsequently continued with the teh subcutaneous injections. I tested JCV positive before starting natalizumab, but my index has always been very low, ranking between 0.22 and 0.33.