MS-Selfie

I was asked this week about the design of the MS-Selfie logo. Subscribers who have been with the Newsletter for a long time may recall me asking you for your opinion about different versions of the logo when I was doodling with the design . However, I never told you about the meaning of the design. I hope the following diagram explains it all and addresses the question. Subscriptions and donations...

Question Prof G, I have been using urine dipstick monitoring as you have recommended, but how do I interpret the results? Interpretation of dipstick results The primary reason for starting MS-Selfie was to provide you with the information to self-manage your MS. I have written an earlier Newsletter ( Infection 29-Jun-2021 )on the use of home dipstick monitoring for the early detection of urinary t...

A question from one of the readers Can you please explain why you think primary progressive multiple sclerosis (PPMS) is not different to relapsing-remitting MS (RRMS) or secondary progressive MS (SPMS)? And what has sliced salami got to do with the classification of MS? Prof G’s Response I may be repeating myself, but it needs to be said over and over again. A lot of people simply accept that (1)...

The following is a list of some of the issues I was going to discuss at a symposium at the MS at the Limits meeting next Monday. This symposium has now been cancelled, although the actual meeting is still going ahead, because of Queen Elizabeth’s funeral on Monday. You need to be aware of these issues to understand the pressures on the NHS. I suspect these pressures are not unique to the UK and af...

I don’t usually cover hardcore research and immunology on MS-Selfie. However, in the survey I did earlier this year, you specifically asked for research updates I surmised that you want to hear about basic research, particularly when it is potentially relevant to MS therapies and future MS research.  As you know, I am convinced that EBV is the cause of MS, so I am running a social media campaign u...

Case study A 29-year male with multiple sclerosis was booked into an emergency outpatient slot for a relapse assessment to have steroids. A week before, he woke with a ringing sound in his left ear (we refer to this symptom as tinnitus*). Over the next 5-10 minutes, he lost hearing in the left ear and developed severe vertigo and projectile vomiting. The vertigo was so severe he was unable to walk...

Case study Dear Prof G, Whenever I see my neurologist, he seems to fob me off as if I don’t have any problem. He disagrees with me when I tell him that my MS is getting worse. He tells me that I can’t be getting worse as my MRI is stable and my neuro exam is unchanged. He doesn’t believe me when I tell him that I am more forgetful and that my fatigue is affecting the quality of my work. Is there a...

Apologies for being almost incommunicado for the last two weeks. I have been away on holiday. I tried to avoid daily work, i.e. checking and responding to emails, social media, reading medical journals, correcting manuscripts, etc., which is why I have been relatively quiet on the MS-Selfie front.  The break allowed me to read some very good books, spend needed time with my family and allow time f...

Case study I am a 48 years old woman with secondary progressive multiple sclerosis. I was diagnosed 22 years ago and was initially treated with interferon-beta (Rebif) for 12 years but stopped it when I moved back to the UK from Australia.  I have not had an obvious relapse since starting Rebif. My last MRI scan before the COVID-19 pandemic did not show any new lesions. My main problems are (1) dr...

The lived experience Having just recovered from my first bout of COVID-19, I now have the lived experience of what it is like to have COVID-19, albeit a mild infection, and its profound fatigue. At the peak of my infection, I experienced ‘cog-fog’ and the associated consequences of not being able to focus on the task at hand, never mind multitasking and getting through a long ToDo list.  Another i...

My thoughts are for people with MS, including all my patients, who have to live through and cope with this latest heatwave.  The BBC is reporting that the UK is likely to record its hottest day, either today or tomorrow.  “An amber warning for extreme heat has begun for England and parts of Wales as the UK braces for record temperatures. The Met Office warning extends to southern Scotland on Monda...

Case study (n=1 or n = me) I am day 4 into my first bout of COVID-19 and it is no joke. Although I only have a sore throat and mild cold-like symptoms the fatigue and cog-fog are something else.  Any physical effort results in tachycardia and a feeling of profound exhaustion. I am having difficulty working, which for me is essential. I had to do two small virtual online clinics and chair an online...

Case study I have had MS for 18 years and I am now quite disabled. I am very unsteady on my feet with frequent falls. I now have to use a walker or Zimmer frame to try and prevent myself from falling backwards. Unfortunately, I fractured my left humerus last year as a result of a fall. Since then my mobility has deteriorated further. I also have tremors in both hands that prevent me from drinking...

Can natalizumab be used to prove that EBV is the driver of MS disease activity?  Natalizumab works by blocking the trafficking of immune cells into the central nervous system (CNS). The current dogma states that these immune cells are what actually causes MS and by preventing them from getting into the CNS you stop MS. The other hypothesis, which is the one that I favour, is that MS is caused by E...

As nobody got the #1 crossword puzzle correct I prepared a second one , which is designed around a case scenario to teach you about how multiple sclerosis may affect visual function in someone with a previous attack of optic neuritis. The participants who submit the correct answers for the crossword and provide a valid contact address will go into a draw to a Lego MRI set. A 24-year-old woman with...

I am not sure if you are tired of hearing about ‘the real MS’ or smouldering MS, but the study below provides you with some hope. A post-hoc analysis of the natalizumab secondary progressive or ASCEND  trial shows that chronic MS lesion activity is associated with disability worsening. This is not a novel finding and builds on other evidence that chronic active lesions, which include slowly expand...

This is an experiment. I am adding a regular crossword puzzle to MS-Selfie as a new feature to try and make learning about MS more fun. The participants who submit the correct answers for the crossword and provide a valid contact address will go into a draw to win a prize; a Lego MRI set. There is a method to my madness in that making you think about the answers to the crossword is good for your b...

Arguably one of the most overused terms to emerge during the COVID-19 pandemic has been the term resilience. Journalists and commentators have used the noun ‘resilience’ or the adjective ‘resilient’ when referring to countries, political, educational and healthcare systems, healthcare professionals and individuals with chronic diseases.  These terms are even creeping into biology, for example, (1)...

Nothing is hidden. If you look carefully, you will find all you need to find. In the study of newly diagnosed Scottish patients with MS, close to 40% had hidden disabilities such as depression, anxiety, fatigue, sleep disturbance, cognitive impairment and pain. Are these MS-related problems really hidden? Yes, hidden from the eye but detectable by simply asking the right questions and assessing th...

Case study Prof G, my neurologist, refuses to tell me if I have brain atrophy or not. He says the neuroradiologists don’t measure it, and even if they did, we can’t use it to make treatment decisions. Do you agree? Prof G’s opinion Yes, and no.  Yes, in the sense that an individual patient level brain volume (BVL) measurements are quite wobbly or variable. At the moment, a change in BVL over a 12...

Case study Prof G, can you have a relapse affecting the same site?  I was diagnosed with MS 15 years ago. I was initially treated with interferon-beta-1a (Rebif) and was switched to fingolimod 8 years ago. Once or twice a year, I get recurrent pins and needles in my left arm, which start in the shoulder and radiate into my thumb and index finger. The pins and needles are accompanied by a burning s...

The reason why rheumatologists are ahead of us in treating rheumatoid arthritis (RA) and protecting joints (the RA end-organ) is that they have an inflammatory biomarker that is closely linked to outcome, it is called the C-reactive protein (CRP), which they include as part of their treatment target. They also include a PROM (patient-related outcome measure) as part of the DAS (disease activity sc...

I am giving a talk this Friday on treating MS beyond NEIDA (no inflammatory disease activity) and I am contemplating what I need to focus the talk on.  I am considering making the talk about a healthy lifestyle, which is probably the most effective preventive health intervention we have.  Study 1 below shows that you can increase your chances, by a factor of over 20, of a life expectancy free of d...

Biohacking is often described as a citizen or do-it-yourself biology. For many biohackers with MS, this consists of making dietary or lifestyle changes to try and make small improvements to your health and well-being. However, more recently MS biohackers have become active in sourcing off-label medications, which are usually prescription-only medications (PoM), in the hope of them improving long-t...

Case study I was on glatiramer acetate (Copaxone) for around 3 years until 2016 - at age 51. After having a regular menstrual cycle for over 30 years, from the month I first started Copaxone until the month after I stopped Copaxone, my menstrual cycle completely stopped. Out of curiosity, during that time, I ceased Copaxone for a few days, I did this probably 3 times over the 3 years. Each time I...