MS-Selfie

How many of you have disturbed sleep? How many of you suffer from insomnia?  In my MS practice, insomnia is the most common sleep disorder I encounter, and it generally goes untreated. The reason is simply because most people with MS accept it as part of living with MS, and it is not prioritised by HCPs (healthcare professionals) who tend to focus on other MS-related problems.  Insomnia Insomnia i...

I have often been asked if I could go back in time and change my career, what would I change?  I probably wouldn’t change my decision to go to medical school. Discovering biology, biochemistry, human physiology, evolutionary medicine, neuroscience, and neurology has been and remains exhilarating. I am an addicted learner and consumer of news related to biology and medicine. However, knowing what I...

Because I refer to smouldering MS as the ‘real MS, and play down the importance of relapses and focal MRI activity in driving MS disability, I am increasingly being asked if everyone with MS has smouldering MS. The answer is NO. And does everyone with smouldering MS end up in a wheelchair? Again the answer is NO.  Once you have been identified with smouldering MS do you get relentlessly worse. NO....

The MS community has painted itself into a corner with how we classify MS. Neurologists in the UK and the United Arab Emirates (UAE) have just published new treatment guidelines based on the old and arguably outdated classification system that MS can be divided into different clinical categories, i.e. clinically-isolated syndrome (CIS), relapsing-remitting (RRMS), secondary progressive (SPMS) and...

Survey results I recently did an MS-Selfie Q&A newsletter on the impact of having MS on taste and included a survey (please see: Q&A-33 multiple sclerosis and taste; 4-May-20204 ) In short, two-thirds of readers were unaware that MS could impact taste. So, this newsletter addressed an unmet need.  Almost two-thirds of respondents stated that they had or may have experienced and alteration in taste...

Anyone who lives in London will tell you that buses come in threes. What you are not told is which bus to catch and which buses to miss.  I have just turned 60, and I have the option of choosing between three buses. I need to decide which one to catch.  I suspect it is quicker to catch the second bus as the first one is usually packed and stops frequently and longer to allow passengers to get on-a...

Sometimes, things need repeating. Exercise, exercise, exercise, ……… I have previously stated exercise is the most underrated and under-utilised multiple sclerosis disease-modifying therapy (DMT) we have. So why is regular exercise not part of the standard MS care package? Please see:  * Exercise, exercise, exercise ... how important is it? (MAR 09, 2022) * Exercise: how important is it? (NOV 23, 2...

MS-Selfie rose-tinted-odometer = ★★★☆☆ A few readers have recently found some of my newsletters so unsettling and dark that one of them unsubscribed. Therefore, I have reinstated my rose-tinted-odometer, a simple 5-star rating of the type of content the Newsletter contains. The rating will allow you, the reader or listener, to make a call on whether or not you want to be exposed to content that is...

The ethics of placebo-controlled phase 3 disease-modifying therapy (DMT) trials in multiple sclerosis (MS) are well-rehearsed; most ethics committees don’t approve these studies. However, in countries with limited access to licensed therapies due to economic constraints, placebo-controlled trials are still being conducted. Participating in a trial, albeit placebo-controlled, is one way of accessin...

I have just returned from a road trip to the Mississippi Delta in the Deep South of the United States as part of my 60th birthday celebrations with my family. We did the Golden Music Triangle (New Orleans-Memphis-Nashville), including a stop in Clarksdale, home of the Dixie Blues. This trip has been on my bucket list for a while. Experiencing the roots of ragtime, blues, jazz, gospel, rock-and-rol...

If you have MS and have been treated with an immunosuppressive disease-modifying therapy (DMT), was HPV (human papillomavirus) infection and/or vaccination discussed with you before starting the DMT?  Before we start female patients on an immunosuppressive DMT, we check to see if they had a recent cervical smear or vaginal swab PCR to exclude active HPV (human papillomavirus) infection. This is to...

I have spoken many times on MS-Selfie about the risks associated with chronic immunosuppression. I was, therefore, not surprised to hear about a patient of a colleague of mine who developed molluscum contagiosum on fingolimod. I suggested they stop fingolimod and transition the patient onto teriflunomide, and if the patient was unable to tolerate teriflunomide, start interferon-beta. The logic beh...

Over the years, it has become apparent to me that people with multiple sclerosis (pwMS) seem to accept developing several comorbidities as if it is just part of having multiple sclerosis (MS). It is as if having MS and living with MS is so overwhelming that other medical problems tend to be ignored. Am I correct in my interpretation? Do pwMS suffer from medical inertia when recognising or identify...

Case study I am 70 years old and have advanced MS with an EDSS of 7. I can’t lift my legs, so I can only walk a few metres backwards with a Zimmer frame, dragging my feet. I’ve got very swollen feet (see photo below) due to spending all but a few minutes of the day seated. I have had Doppler scans of my feet, and there’s no blockage. Also, I have no heart issues. To try and reduce the swelling, I...

The phase 2 data of frexalimab in relapsing multiple sclerosis has just been published in the New England Journal of Medicine. This is very big news and has rejuvenated my enthusiasm for the future of MS treatments.  CD40 is a critical costimulatory signal that drives T-cell activation and is involved in B-cell and innate immune activation. The phase 2 Frexalimab study results are strikingly posit...

Dehydration is not a good way to control your bladder symptoms. Almost 30 years ago, while doing my PhD on a urine biomarker of inflammation, I noted that urinary concentration of creatinine, a muscle metabolite excreted in the urine, correlated with disability. I soon worked out that people with MS with worse disability (higher EDSS) were more likely to have bladder dysfunction and were dehydrati...

Case study I am a 54-year-old male with secondary progressive MS. I am not on a disease-modifying therapy at present. I was on fingolimod, but it was stopped two years ago when I started using a wheelchair. I have severe marked spasticity in my legs despite taking baclofen 20 mg three times a day. I take my first dose of baclofen at about 8 am, the second at 3 pm, and the third before bed at night...

Merck’s press release on the Evobrutinib vs Teriflunomide phase 3 EVOLUTION trials says more about teriflunomide than evobrutinib, but they do raise questions about all the other Bruton Tyrosine Kinase Inhibitors (BTKi) in clinical trials in MS and other autoimmune diseases.  05 DEC 2023 | DARMSTADT, GERMANY “Results from the EVOLUTION clinical trials showed evobrutinib did not meet its primary en...

Last weekend, I attended the AIMS (Autoimmunity In MS) Charity AHSCT (autologous haemopoietic stem cell transplantation) meeting that was held in Sheffield. All the big guns offering AHSCT to pwMS as a private procedure were there. That was the problem with the meeting; there were no AHSCT naysayers, except my ghost from Christmas past. Applying BBC-like rules to provide both sides of the AHSCT ar...

Like me, most of you have probably been following the ups and downs of OpenAI in the press this last week since Sam Altman, its CEO, was fired and now reinstated with essentially a new board. It turns out it was down to a boardroom battle between the AI boomers and AI doomers, and it seems the boomers have won the day. ‘On one side are the “doomers”, who believe that, left unchecked, AI poses an e...

The 7th of November was the third anniversary of my accident when a speeding motorcyclist hit me whilst out jogging. Only three years ago, I was lying in the neurosurgery ward at King’s College Hospital, in a state of morphine-induced torpor, waiting for a rehabilitation bed that didn’t materialise. Thankfully, I have made a reasonable recovery, with minor residual problems that have clipped my qu...

Case study Prof G, I am 63 years of age and have had multiple sclerosis for 27 years. I have recently had to retire as a journalist because of cognitive impairment and fatigue. I do not have the mental energy and cognitive capabilities to perform my job. Since having COVID-19 in 2021, my cognitive function has plummeted. Using your online EDSS calculator, my EDSS is 5.0. I am still taking fingolim...

Case study Dear Professor Giovannoni My 17-year-old son has just been diagnosed with multiple sclerosis. As you can imagine, as a parent, I am very concerned about his long-term future. His neurologist has recommended he start fingolimod without much discussion about other treatment options. Is there any advice you can give about the underlying principles of treating MS in young people?  Prof G’s...

I gave the annual Murray Bornstein Multiple Sclerosis Memorial Lecture at Dartmouth College on Friday. Murray B. Bornstein (22 November 1917 - 31 August 1995) was the principal investigator on the original COP-1 trial that eventually led to the licensing of glatiramer acetate (Copaxone) as a treatment for MS. I never met Murray Bornstein, but it is worth noting that the original COP-1 paper was pu...

I have just returned from my summer holiday, where I had time to reflect and think about multiple sclerosis research, the practice of neurology and managing multiple sclerosis. We are at a crossroads where things are changing rapidly, mainly driven by developments in information technology. Over the next few weeks, I will cover these issues in more detail, in particular (1) the most exciting curre...