46 Comments
Jan 5, 2023Liked by Gavin Giovannoni

This sounds almost identical to my story except I wasn't lucky enough to have a neuro like yourself to give me the benefit of the doubt. I believe that a lot of it comes down to education of newly diagnosed patients. I knew nothing about MS when I was diagnosed, I didn't know what a relapse was or what any of the many symptoms could be. In my head the tingling, sensory symptoms etc were a normal part of it so didn't pay any attention to them. At the time I thought I was 'lucky' as I didn't have anything that I felt needed reported to a doctor. Denial also played a big part in it but looking back I had multiple relapses over the years although none of it counts as it wasn't recorded. I am so happy that people coming down the line will have better access to treatment but please don't underestimate the difference the education and information provide you makes to people!

Expand full comment
Jan 5, 2023Liked by Gavin Giovannoni

28 yrs now SPMS now living in a care home age 58.

Early treatment would have been a loud "YES" and I would encourage others.

This early treatment would be enormous as in health and well being instead of left in the woods as I was still am but understand more as lots of literature etc.

Preventive medicine early is key and shines a light of hope for CIS.

Happy 2023 😊 .

Expand full comment
Jan 5, 2023Liked by Gavin Giovannoni

Love the Attack-MS idea the only issue is patients

Eg I’m on natalizumub myself. 36 year old male. Had my first main attack in May 2021 was on Tysabri in Sept (diagnosed in July) the hold up was trying to understand if it was carpal tunnel or something else (had a stomach hug and hand neuropathy) I had no clue what it was and Did not think or understand MS at the time.

I know that I had neck lehrmittes sign at least 12 months prior, maybe more + heat issues.

So, if patients themselves are unaware or putting off symptoms then I don’t know how well it will work. We need better education in the public for MS as most people don’t know what it is (I didn’t)

15 mths on Tysabri and stable, no new symptoms and have full mobility just the occasional lehrmittes sign and constant hand neuropathic symptoms.

Expand full comment
Jan 5, 2023Liked by Gavin Giovannoni

You asked: Would I want to take part in a study like this? Yes I would.

With what’s known now that is.

My own case is pretty similar to your case study but from maybe 20 years previous to your patient

As it happens, I was personally in charge of authorising exceptional referrals which included interferon – when it had just come out

I decided then that the evidence was so poor (for disability) that I didn’t want to even argue to take it

And I’ve generally avoided having contact with MS doctors and nurses - since they (sorry) weren’t helpful.

I will now do what you say about reporting relapses.

Since I’ve got multimorbidity it can be difficult to disentangle what’s ms and what’s the other stuff. I’m sure I’m not the only one in this situation!

But what I want to ask please is whether you’re really totally disinterested in all those thousands of people who have a history of MS and are perhaps being under treated? What best to do for us?

I understand that the NHS is under ridiculous pressure at the moment but if I continue to use myself as an example, I have only had three MRIs in 30 years of MS. The MRI results take between three and six months to come back to me. So I’m probably progressing between MRI and getting the results.

I was recently eventually told that im “eligible” for the least effective treatments. But I’m still waiting to hear anything specific about that. I am currently arguing for at least a small reversal of the pyramid. But, unsurprisingly, I’ve heard nothing back about that

The real point of my question here is are all of us have not just been diagnosed being forgotten? Ignored? or simply not considered important for the clinicians?

I understand this a more difficult question . but that’s surely not a reason to not even try to answer it

Thanks so much for your work. About subscribing, it is quite a lot of money for those of us who aren’t able to work. Have you thought that maybe you ld get more people subscribing if it was slightly less? Please don’t think that I’m saying here that your work is not worth money! It’s extremely valuable!

But especially in the cost of living crisis, there are lots of us of us who cant work who have to prioritise heating, heating, charging mobility scooters and wheelchairs

Best wishes

--

Expand full comment
Jan 5, 2023Liked by Gavin Giovannoni

Reading this post and the replies makes me feel like an alien or time traveller. I was severely disabled by every symptom of MS for 30 years; dozens of NHS doctors told me I was making it all up. The NHS refused to let me see a neurologist or have an MRI scan. I only have a diagnosis now because eventually I managed to diagnose myself and go private.

Honestly, after decades of NHS brainwashing and 'severe cerebral atrophy', I don't have a clue how to recognise relapses or believe they matter.

I definitely agree that everyone should have access to whatever treatments they choose. I hope this trial allows self-referrals, that's the only thing that would have saved me.

Expand full comment
Jan 5, 2023Liked by Gavin Giovannoni

Hello and Happy New Year

Yes, I agree that cladribine should be a first line DMT. When I was diagnosed, figolimod was the new kid on the block and considered to be a great choice by my neurologists in the US. It was very difficult to sway my insurer to see things the same way. The usual course of less-effective DMTs for one year minimum is what is usually required by insurance companies here. I was lucky in that my neuro went to the mat for me and I was able to start with Gilenya. My main motivation was that it was new and that it was not an injection. I really had no idea what MS was or what it required. An ER visit after my first relapse suggested I had a stroke. After that was ruled out, I had to wait six months to get in to see a neurologist. I was given information to read and decide which DMT I would like to try and I chose Gilenya. I was told that was a good choice because if I moved to the front of the line and used Tysabri first, I’d have no where to go if Gilenya didn’t work out.

I now have a new neuro and he prescribed cladribine and it has been an improvement for me. I did not realize I was having breakthrough symptoms while on Gilenya. I hope it becomes a first-line choice for pwMS in the future.

I also think educating a new MS patients would be very helpful. Recognizing a relapse is still confusing to me.

Expand full comment
founding

It’s too late for me, but you ask specifically would I participate in such a clinical trial, my answer is a resounding absolutely! I have no doubt that taking Avonex for 20 years helped me, but heaven knows how long I’ve had MS, and I don’t think that was enough, particularly for saving cognition. My story is similar to so many. Early on, I was actually embarrassed to tell any physician of these wild symptoms that would resolve seemingly magically. I finally called a neurologist I knew through work and described the symptoms. The very first thing he asked was my age (38, and I’d had my second child, via c-section, at 34. First major surgery ever, and I never recovered.). MS was his first guess. But even with abnormal EMGs and MRIs early on, I wasn’t diagnosed until I was 42. It took five years and a bout of optic neuritis to get Avonex started. The interferons were the sole option. The concept of treating MS as we treat stroke crisis is an excellent idea. When I had a critical event that ended my L sided hearing, it was almost impossible to sort it out from stroke v MS. And no one even tried, because they didn’t take it seriously. So I say, go for it. Thanks Prof G. I’m grateful for your novel approaches to this devastating disease. I’m sorry you got flu! Wishing you and all here the best new year!

Expand full comment
Jan 5, 2023Liked by Gavin Giovannoni

I was diagnosed in 2005, 5 years after what I later realised was my second relapse. I wasn’t offered any DMTs, and now classed as SPMS. Why do medics assume that people know what an MS relapse is?

I certainly didn’t. I was just given a diagnosis and went home to cry.

Some guidance and support would have been welcome. I hope the situation is better now for those who are newly diagnosed..

Expand full comment

Re

This is why I am lobbying Merck and Biogen, the manufacturers of cladribine and natalizumab, to apply to the MHRA for label changes to allow us to use these agents first-line in patients with active MS. Do you agree with me?

Yes! Absolutely no reason why they shouldn't be offered.

Expand full comment
Jan 5, 2023Liked by Gavin Giovannoni

I totally fail to understand why when SPMS without any more relapses , which then seems exactly like PPMS is not indicted as suitable for PPMS DMTs …. Why are they not deemed effective .

Expand full comment
Jan 5, 2023Liked by Gavin Giovannoni

Brilliant newsletter and Attack MS approach sounds like the way to go. With the right information at the get-go I would totally sign up for this as a new patient.

Regarding flagging new symptoms: I agree with Christian that as new pwMS it is extremely hard to know what is a symptom of MS, no one tells you what might happen or what to look out for. In addition, determining what is new, what is reoccurring or what is evolving is hard to know as a lay person, likewise what is attributable to non-MS causes.

I feel that it’s probably just as hard for a neurologist to tell and so possibly this is why only the very obvious MS relapses are logged.

Symptoms like brain fog, chronic fatigue, aches and stiffness or RLS, or bowel and bladder problems, can be dismissed as ‘the normal strains of being a parent’ for example. It’s very easy to be gaslit here as a patient, or be told to watch and wait. Or wait until the two year MRI! So many pwMS are diagnosed late because their individual symptoms were attributed to various other causes rather than assessing the patient over time as a whole and seeing the patterns.

Going back to patients understanding their own MS symptoms; It’s hard to identify what a symptom is when you’ve never experienced it before, for example mild spasticity in the limbs where your limb feels like it’s being pulled or tightened inwards - how can a new feeling like this be identified with the correct diagnostic term, when it happened to me I didn’t know what it was or if it was a ‘known thing’. MS is full of these weird sensations and it would be amazing to have a patient manual, where you can look up the sensation or identify a description of what you are feeling and what that feeling is called medically. This would be more empowering for the pwMS, to discuss with a health care professional knowing they have identified or clarified the ‘feelings’ somewhat. I’ve had moments where I can’t comprehend written words for example, I’ve had years of weird momentary ‘rushing’ sensations which start in my feet and end in my head with lightheadedness, triggered by sudden noise and flight or fight response - but I don’t know what that name is or what it means! Without the name it’s hard to clarify or communicate it, it has no gravitas.

MS is not a single diagnosis but under the umbrella of MS there sits the need for many further diagnosis for the multitude of evolving symptoms. So as we can’t see our neurologists frequently, we need as pwMS some more resources like your newsletters to try to navigate what MS feels like, what does nerve damage feel like and who do we tell and what can we expect in terms of speed of escalation?

With MRI’s now reducing to once every two years, on top of just one yearly 5 minute phone consultation, it’s going to be difficult for pwMS to cover their years worth of symptoms. The most obvious ones will naturally float to the top and all these many other important ‘lesser’ or more difficult to quantify symptoms will be lost or overlooked or ignored. So this incomplete picture will impact the advice and support they get for treatments.

What about some kind of online patient symptom reporter/tracker that the patient inputs in real time and the neurologist and GP can be assigned to, to build a yearly picture prior to the yearly appointment we are allocated, or to flag a new emerging symptom that might be significant?

Sorry such a long response but one question; with a high efficiency DMD early on what is the average onset of SPMS compared to no DMD? Do all pwMS eventually become progressive? I know you’ve spoken about MS as one disease but I still don’t understand these stages.

Many thanks and a very Happy New Year to you Prof G!

Expand full comment
Jan 7, 2023Liked by Gavin Giovannoni

Another informative post cast, thank you Prof Giovannoni. But I feel like crying now I've listened to it and read some of the comments. I feel my MS is probably not being handled very well and wish I had a neurologist like you. I still have no personal notion of what a relapse is despite telling clinicians this. I am therefore on the 'wait and see' list despite reporting increasing symptoms. When I phoned the neurologist nurse to say I was experiencing tingling in my right foot (as opposed to the affected left side) I was told not to worry about it, so I don't suppose it has been recorded. I won't go into my whole story but feel very frustrated by my (lack of) treatment and fear that irreversible damage is occurring without medication.

Thinking of others, I think this initiative sounds like an excellent idea and could save a lot of difficulties in the long run. The more potential damage can be stopped early, the better it is both for the patient and their families and the less strain they will put on the NHS and social care as a result as the years go by. Win-win!

Expand full comment
Jan 5, 2023Liked by Gavin Giovannoni

Good podcast Prof G, I really enjoyed listening to it. Sounds very similar to my highly active rapidly evolving RRMS diagnosis in 2014! I still remember the radiographer in Edinburgh asking me if I was sure I hadn't had symptoms for much longer than I thought because according to him my brain told him something different.

Fortunately my neurologist agreed and I started Tysabri as soon as I was able to take my diagnosis in, diagnosed 1st August 2014, started Tysabri before my birthday on 30 September 2014 which I'm so thankful for but my EDSS has been 6.0 since the start :-(

To answer your question I would always recommend starting a DMD as soon as possible and if joining a trial to get it had been necessary I would have considered it :-)

Keep up your good work Prof G, it makes sense to me living with MS, thank you for your work, I appreciate it. Karen

Expand full comment
Jan 5, 2023Liked by Gavin Giovannoni

I'm fairly sure that if a) treatments were easily available at diagnosis (2001), b) that I hadn't gone a long time with no treatment (2008-2012) because I hadn't had an mri since diagnosis. I would still be working instead of having to lay down after cleaning the bathroom. I am finally seeing my neuro after more than 3 years in March after contacting PALS because of a mistake made during ocrevus treatment (I was prescribed half dose despite it being my second full dose). I had a change from tysabri to ocrevus without seeing him because I had been getting ever more severe infusion reactions with tysabri after 9 years.

Expand full comment
Jan 10, 2023·edited Jan 10, 2023Liked by Gavin Giovannoni

Deleting comment to post in other article

Expand full comment
Jan 7, 2023Liked by Gavin Giovannoni

Such a sad story as there are many. Hope this person doesn't blame himself for not pushing his neurologist more to get treatment. Our brain will always tell us we can't be that sick, we won't lose that much.

MS is such an unpredictable disease which is enough reason to join ATACK if you qualify

Expand full comment