MS-Selfie

As natalizumab’s or Tysabri’s patent is about to expire Biogen the company that market’s the product has launched a new subcutaneous (SC) formulation and now have a very active marketing campaign to get us to switch our patients from the IV formulation to the SC formulation. Their argument is that moving from a 60-minute intravenous infusion to two subcutaneous injections of 1mL each will save bot...

I have been running a campaign that #MS_is_1_not_2_or_3_diseases for sometime. This is based on the biology of MS and not what we see clinically. The pathology that underpins so-called progressive MS is the loss of axons, neurons and synapses. All three of these processes begin very early in the so-called asymptomatic stage of MS. What dictates whether or not we see the effects of these subtle cha...

Medicine and neurology are an art and not a science, which explains why one neurologist or MS centre may say one thing and a second or third neurologist will say something else. I am acutely aware this causes confusion and is very frustrating for many people with MS. “The practice of medicine is an art, not a trade; a calling, not a business; a calling in which your heart will be exercised equally...

I have been trying not to do yet another COVID-19 update, but I think there have been enough recent developments for a COVID-19 newsletter and sometimes it is worth repeating things.  New data A large UK study (paper 1 below) in over 1.5 million COVID-19 cases confirms that cases of COVID-19 due to the Omicron variant are a lot milder than with Delta, which has now replaced Delta as the world’s do...

The war in Ukraine and the threat of wider military engagement across Europe and the recent surge in COVID-19 cases ramp up stress and its potential impact on MS. My stress levels have gone up several notches. I have developed acute attention deficit disorder as a result of intrusive thoughts about the war and a continual desire to doom scroll. Help! I was genuinely surprised at the response I had...

I have said many times before that I believe exercise is the most underrated and under-utilised MS disease-modifying therapy (DMT). Why does it have to be a belief? Beliefs are for zealots and not for scientists. Therefore, is it not time to follow the science and test the hypothesis that exercise can modify the biology of MS? I am therefore proposing we do a study of exercise as a treatment for s...

This is the second in a series of MS-Selfie Newsletters on specific disease-modifying therapies (DMTs) and is part of the ongoing series of questions you need to ask, and have answered, by either yourself or your HCP, before starting a DMT. * What is multiple sclerosis (MS)? * Am I sure that I have MS? * What type of MS do I have? * What prognostic group do I fall into?   * What is the risk of not...

Case study Did stress trigger my latest relapse? Over the last 18 months, I have lost three close relatives and my job. I was made redundant during the second lock-down. I now live alone and spend most of my time thinking about the future, which looks very bleak. Three weeks ago I developed increasing weakness in my right leg associated with pins and needles down the front of the leg. My walking d...

Virus, virus where art thou hiding. Would you volunteer to participate in a clinical trial of an antiviral drug cocktail to suppress MS disease activity, in particular smouldering MS? There is now a reasonable body of evidence in the literature that human endogenous retroviruses (HERVs) may play a role in autoimmunity, in particular MS. HERVs are viruses (genetic code) that have been incorporated...

Case studies I have been asked by two patients, independently of each other, who had delayed access to treatment with a disease-modifying therapy if this could explain why they now have secondary progressive MS.  Prof G’s opinion A good colleague of mine who was the primary driver behind collecting and analysing the 21-year interferon-beta-1b survival study (see below), said to me that to him this...

As the goalposts or treatment target in MS move beyond focal inflammation, i.e. relapses and/or focal MRI activity, to focus on end-organ damage and smouldering MS, we were hoping that serum neurofilament light chain (NFL) levels would be part of the solution. Maybe not?  In the ASCEND (natalizumab in SPMS) study below the investigators looked at how good serum neurofilament light (NFL) levels wer...

I am still receiving several queries a week about COVID-19, its vaccines and the management of MS during the tail of the pandemic. The following is a quick summary of important things to know about COVID-19 and MS.  New BA.2 Variant The new BA.2 variant, which was first identified in Denmark, has started to surge. BA.2 is likely to become dominant and take over from the Omicron BA.1 variant in the...

This is the first of a series of upcoming MS-Selfie Newsletters on specific disease-modifying therapies (DMTs) and is part of the series of questions you need to ask, and have answered, by either yourself or your HCP, before starting a DMT. * What is multiple sclerosis (MS)? * Am I sure that I have MS? * What type of MS do I have? * What prognostic group do I fall into?   * What is the risk of not...

Does big data have the answers? The study below of over 27,000 people with multiple sclerosis (pwMS) and about 200,000 EDSS transitions tells us what we know already that relapses make only a small contribution to MS outcomes and this contribution is relatively early on in the disease. In other words, the real MS is smouldering MS or as measured in this study progression independent of relapses (P...

It is argued that low vitamin D (vD) levels are a consequence of having multiple sclerosis, other autoimmune diseases (AIDs), or active inflammation in the case of infection. This is because active immune cells consume vD. Hence the low vD levels are not a cause or a risk factor for AIDs but a consequence. This is the so-called reverse causation theory.  I attended a National MS Society Vitamin D...

Case study I am a 48-year old woman with secondary progressive MS that was started on Siponimod 6 months ago. Unfortunately, I have had two seizures and have now been diagnosed with epilepsy. My neurologist started me on lamotrigine and it caused me to go off my legs. Two days after starting lamotrigine I couldn’t get out of bed; my legs collapsed under my weight. I have an EDSS 6.5 and use a walk...

I was criticised last year for suggesting lifestyle changes to people with MS (pwMS) as I have no idea what it is like to have MS. The implication was that unless you have lived with MS, i.e. having a lived experience, I shouldn’t be making any lifestyle recommendations to pwMS particularly around weight loss and diet.  What I can say is that I have treated and followed thousands of people with MS...

Case study I need your advice about CIN (cervical intraepithelial neoplasia) and ocrelizumab. I am in a tough situation, and I have been given different opinions from various specialists and I am confused about what to do. Unfortunately, I have an active HPV infection (type 52 and 6) on PCR. Fortunately, my cervical smear tests are all clear. Since reading your article I've been considering gettin...

Case Study Hello. I am a 38-year-old woman diagnosed with MS in 2002. Here is my story: Optic neuritis right eye 2000. Diagnosed with MS in 2014 after presenting with left optic neuritis Relapses followed in 2014 with numbness and heaviness of left leg and in 2015 decreased balance requiring a walking stick to mobilise. Treated with Alemtuzumab in 2016 and 2017.  Developed hyperthyroidism after al...

Case study Dear Professor Giovannoni Firstly, thank you for your Newsletters. I find them very helpful and reassuring even if the ones on smouldering MS are frightening.  I am 33 years old married woman and have two young children; a daughter who is 4 and a son who is 18 months old. I know my children are at increased risk of getting MS. You have convinced me that EBV is the cause of MS and I don’...

Case study I am 32-years of age and have relapsing-remitting MS. I have been on ocrelizumab for just over 2-years. Since starting ocrelizumab I have had two serious chest infections, which required admission to the hospital. I have also had a serious infusion reaction from which I thankfully recovered. I have also experienced progressive worsening of neurological symptoms with MRI confirmation of...

Case study: Prof G, I am contacting you as I think I am having a relapse. I have just been diagnosed with COVID-19 after being exposed at Christmas to my niece who developed symptoms late Christmas day. I have a typical cold and a sore throat with a temperature of 38.2C. When I woke up this morning I had a numb and clumsy left arm and I noticed my left foot was dragging when I went to the toilet....

Happy New Year. I hope you are all safe and looking forward to 2022, which is going to be very different to 2020 and 2021 from a personal and MS perspective. Case study: low-dose ocrelizumab due to adaptive dosing Shortly after the beginning of the COVID-19 pandemic, my neurologist changed the frequency of my ocrelizumab infusions. It has been 14 months since my last infusion. He wants me to wait...

I am aware that a lot of you are very uncertain about what to do regarding Omnicron and the different advice you have been given about vaccines, shielding, DMT usage and COVID-19 treatments and some of the terms used by the scientific and medical community. On top of this is the Infowars between public health professionals, their governments and the nefarious agents peddling misinformation and dis...

Did you know if you as a person with MS you have more than a 1 in 3 chance of being a migraineur or a person who has migraine headaches? Case study I saw a 42-year-old woman in my MS clinic several months ago for her annual MS follow-up appointment.  When I asked her what was her main problem she volunteered severe and intractable migraine. She was getting 2-3 attacks of migraine per week and was...