34 Comments
Mar 8, 2023Liked by Gavin Giovannoni

Thank you so much providing these in audio as well as written format. My eyesight is so poor and memory so goldfish like that to read which was a life long love is now a torture. I asked about being included in the MS Chariot trial but my neurologist refused saying there are enough good drugs that we know how to use! I have had new lesions, worsening cognition and very poor upper limb disability on Tysabri plus recently a nasty brain infection. I have also had a really gloomy outlook on life which is totally unlike me. I have asked to be transferred to another hospital for my care but the referral letter is not very complementary putting it mildly. I know that in trials you can get the placebo but if it helps others in the future I really don't mind. I can't get any worse. Sorry for the rant! Thank you so much for being the kind of Neurologist we can only hope for.

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Mar 8, 2023Liked by Gavin Giovannoni

I need your insight on all things MS related to better advocate for myself. My neurologists since I was diagnosed in 2009 are not exactly front runners in MS care, nor do they want to be.

Since I first found you and the rest of the crew on the Barts MS site, I’ve been a faithful follower. Thank you!

I’m a self diagnosed smoldering MS patient in the USA who is in the process of trying to find a new neurologist!

Sorry it took me so long to subscribe.

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founding
Mar 15, 2023Liked by Gavin Giovannoni

I'm sending you the email I sent to my MS nurse, maybe you can help (I know she's snowed under - probably you are too).

I wonder if you can help. I have an old friend in London - another MSer - we've known each other since we were little, over 40 years now. He's had MS almost as long as me (20+ years for me) but his neurologist always told him he didn't require MS as his MS is "stable". This is a guy who went from being a martial arts expert to now barely able to walk with two crutches and permanently disabled.

He's been told his episodes are pseudo symptoms or his body reliving old episodes. He gets a few of these episodes every year and then, from time to time, a different one. They are about to do his first MRI in about 7 years. All his doctors have changed as his original team retired 5 years ago.

He is on pain medication for the constant pain but other than that, no treatment.

I think he might be open to a slightly more aggressive treatment regime or at least some form of maintenance DMT - or even something more radical like an IRT but he seems to have completely fallen through the cracks. How would he even go about demanding a change of specialist?

I feel helpless advising him because - I'm not a neurologist, I now live in a different country, I know the NHS is absolutely falling apart and patients expecting any kind of treatment in a timely manner are made to feel like they're being overly demanding... But I can't bear to see what he's having to go through, knowing what I know, seeing what I've seen here. How... how would I even start trying to help in such a situation? Can you advise?

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Mar 9, 2023Liked by Gavin Giovannoni

Thank you Prof G, another very good newsletter.

Medical gaslighting is so easy to do for the professional and so hard to overcome by the patient and clearly happens in many areas of healthcare. Although I’m very pro a patient driven, holistic self-management approach, it really can’t be in compensation of poor proactive approaches by the HCP’s.

It really does seem to come down to which neurologist you are given in your area, why is there not a basic standard and structure for patient appointments which patients can rely on and expect from all neurologists, every year? As we only get one appointment per year and an MRI every two years - is there not a clear checklist for all neurologists to have proactively covered all the essential things like MRI’s and smouldering MS, EDSS and reviewing the years symptoms and the patients general health, ordering tests, reviewing meds and DMT’s, referring to supporting services to tweak the care each and every year? Should it not be the neurologist who carefully elicits the necessary information from the patient and offers the right support, rather than the patient having to confront (what feels like frequently) reluctant doctors only for excuses to be made?

Although I always feel empowered by the knowledge in your newsletters and lucky enough to be at Barts myself and have a great experience of HCP, I feel slightly alarmed reading others comments and realising the gaps in the provision they receive. I especially worry for those who have cognitive or confidence difficulties negotiating such conversations. All those that are reluctant to assert, confront or doubt themselves when faced with experts.

My question is what is being done to equalise the provision across our country. And to a lesser extent, what can be done in monitoring patients remotely between yearly visits and two-yearly MRIs? It seems to me like some kind of ongoing tracking accessible by patients to dip into throughout the year might be a useful tool to collate and provide insights for smouldering MS - alongside the EDSS tests Barts do.

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founding

I also appreciate the audio, since I have to drop off of computer screens regularly due to eyesight. It seems others experience this also. My neurologist here in the states does believe in smoldering MS, but was worried about prescribing any medication due to blood counts. Then, a PCP I have had for several years, who is never available for anything but worthless Medicare semi-annual visits, screamed in my face when I had to turn her planned Medicare visit into a “sick visit” (which they wouldn’t schedule for a bout of monstrous ongoing sinusitis) that the counts were of no concern. Thus, gaslighting in a huge way, as well as disrespecting confidentiality, yelling in the open hallway asking if I was “seeing a therapist”! And screaming at me to stop napping during the day. (I sleep when I can!) I don’t know what to think anymore. But this a physician I will never return to, though there are few, if any, PCPs here who aren’t cash pay. So I slog along, particularly with cerebellar issues continuing to worsen. Which is why I appreciate your continuing help and support for us. A huge thank you, Prof G.🌷

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Mar 8, 2023Liked by Gavin Giovannoni

I read about this yesterday for the first time.

vidofludimus calcium for the treatment of MS .

Your insight?

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Mar 8, 2023Liked by Gavin Giovannoni

Honestly, I don't know whether I have smouldering MS or not. I once again feel like a time traveller from the past. I was severely disabled by MS for literally decades, while the NHS insisted there was nothing physically wrong with me, and refused me access to a neurologist or MRI. So I have no idea whether I have smouldering MS or if this is just what decades of undiagnosed/untreated MS feels like?

In the time since I gave up on the NHS and paid for my MS disgnosis, I've learnt that new MRI activity means nothing in terms of my symptoms and level of disability. When people say I have 'no activity' or am 'in remission' like I'm cured, I side-eye them so hard, because it literally makes no difference to the hell MS puts me through every single day 🤕

I'm going to try emailing my neurologist and ask him to test me for smouldering MS 🤷

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I know two teachers in Canada diagnosed with "probable MS" - as a result they are not able to apply for short or long term disability - both women are trying to stay teaching, but are finding it very difficult - is "probable MS" similar to "Smouldering MS"?

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Mar 9, 2023Liked by Gavin Giovannoni

Also maybe a pay per newsletter option?

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Mar 9, 2023Liked by Gavin Giovannoni

Thank you for this audio. I am sure I have smouldering MS, which was triggered by 2 months of pneumonia and 45 days of antibiotics (8 different types of antibiotics). No new activity on MRI, still receiving Ocrevus, but my walk, balance and strenght have rapidly deteriorated in the past 12 months. My EDSS has increased from 1 to 2.5. Alas, I live in Bosnia and Herzegovina and I don't have access to new drugs, can't be part of new trials, and medical gaslighting is a norm here. Thank you for all your articles, because at least I know that "it's not all in my head", and I feel better when I understand what is wrong with me. Take care and best regards!

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Mar 9, 2023Liked by Gavin Giovannoni

Is fatigue still being there a sign of smouldering MS?

My fatigue started *after* I went on a dmt (Tysabri) so I don’t think I’d call that smouldering MS. Plus I have 2 kids and travel for work so really tough to attribute it all to Ms

My symptoms are there most days but nothing is worse just the same.

I guess if I had major cognition issues I’d say that I’m worsening but so far neida based on mris and my current day to day symptoms

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Mar 8, 2023Liked by Gavin Giovannoni

Thank you for sharing this audio. I dont mind donating. Whats more I will send money for sure. Regarding money (its always very unpleasant topic). In one of the articles of prof Steinman I found this info: " (...) Lawrence Steinman also has patent filings regarding antivirals for the treatment of MS (...)". What does it mean in clinical trials of antiviral drugs? Does it mean that all benefits of all these trials will go to one person who came up with the idea of treating ms by using antiviral drugs ? Sorry, maybe its inappropriate question...

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Mar 8, 2023Liked by Gavin Giovannoni

I think you’re being a bit harsh on the patient’s neurologist. The patient says that the “neurologist refuses to do additional tests to diagnose smouldering MS”, but what additional tests are available to the standard neurologist to confirm smouldering MS? And if tests did confirm smouldering MS, I don’t believe there are any specific licensed therapies available to the neurologist to treat it. Given a prod, all the neurologist can do is suggest that the patient considers getting on the SIZOMUS trial, or one of the BTK inhibitor trials. We’re in no man’s land at the moment - the finger points to smouldering MS as the driver of progression, but we don’t yet have licensed therapies to do anything about it.

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Hi Dr. Giovannoni, I was looking for information on smouldering MS as I have paramagnetic rims, an obvious sign of chronic inflammation. So, I read your article on Smouldering MS and it was very informative. My question is about HRT, it is written in the Fig. 5 chart, how does it help brain health? Also, you mention anticholinergics, but recent research has demonstrated antichholinergics (I.e. H1 antihistamines) to contribute to dementia. However, clemastine (an H1) has demonstrated possible remyelination properties. Just curious about the HRT and the anticholinergics, thank you!

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deletedMar 8, 2023Liked by Gavin Giovannoni
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