The Barts MS team are running a study, investigating whether a new hand and arm activity called “Under & Over” can improve upper limb function for people with MS. The study is titled: “Under & Over: A controlled study to develop an upper limb rehabilitation tool for people with Multiple Sclerosis.” This study is now recruiting – find out more information on the...
Trigeminal neuralgia (TN) is an excruciating shooting pain involving one or both sides of the face; occurring in isolation (also termed idiopathic) or as a symptom of MS or other neurological disorders. It is literally a pain for both the patient and the doctors who manage it. The only plus point is that it is episodic in nature. However, with any recurrence you are pretty much starting again at...
Many year ago I was having a conversation with NDG and neurofilaments and she said neurofilament light was the wrong outcome. I didn’t really get it because, surely as a nerve dies it releases its contents (i.e. neurofilaments). However, I now think that neurofilament light is like a global MRI scan. If you can find neurofilaments then there is a lesion somewhere in the CNS. You may not...
In this paper the duration of use of ocrelizumab is a Coivd-19 risk factor in other papers, there is no risk. What is correct. I suspect abit of both and so if there is a risk I think we can say it is small, otherwise every study would be the same. Also we have to remember ocrelizumab is the agent approached for progressive MS and disabilty is a risk factor so this confounding variable needs to...
Heads up! To all with MS, on immunotherapies, heading to the Excel Centre in London for your 2nd jab… As soon as you arrive tell a staff member so you will get taken to the front of the line… and not have to wait for ages. I think where every you go, do the same. This advice from Rachel has been confirmed by Sarah (Both Blog Readers). Thanks to them for that. Spread the word by your...
Barts-MS rose-tinted-odometer: ★ Variation in access to good medical care and better outcomes has never been higher in high-income countries such as the UK. Variation is simply a euphemism for inequality. The MS community in the UK realised this a few years ago, which prompted us to launch our ‘Raising the Bar’ initiative to address inequality in access to healthcare for people with MS living in...
Fair enough, there has been a build up to this. After all, a couple of days ago MD ProfB explained – again – that whilst both cladribine and alemtuzumab are immune reconstitution treatments (IRTs) with significant long term effects on B cell subsets, particularly the memory B cell pool, this is where their similarity largely ends. Next came ProfG detailing 17 attributes of cladribine...
Barts-MS rose-tinted-odometer: ★★★★★ Early on in the pandemic, I did a blog post on why I thought oral cladribine was the ideal DMT for managing MS (26-April-2020) remotely. I summarised cladribine’s attributes in a simple 12-point list. This list can now be updated to include (1) data on good COVID-19 outcomes in pwMS who have been treated with cladribine, (2) about vaccine readiness, i.e...
During the COVID-19 your neuros have taken the cautious lazy approach> intitially in the UK neuros were told to: Stop, Stop, Stop the high efficacy treatments and cladridine as an immune reconstitution therapy has been lumped together with alemtuzumab due to laziness and a lack of appreciation of the different biologies. Alemtuzumab is not cladribine. Cladribine is in my view one of the better...
Some people chose dimethyl fumarate and this can cause significant drop in lymphocyte numbers and so this causes a headache for the neuro about switching you to other treatments. If you stop fingolimod or natalizumab disease can rush back (rebound), however with depleted cells they repopulate at a slow rate and so are unlikely to appear all at once and so rebound is less likely and relapses may...
Barts-MS rose-tinted-odometer: ★★★★★ I think the North American MS community have made some mistakes with their COVID-19 vaccine recommendations, in particular, the NMSS COVID-19 vaccine guidelines for cladribine. In view of the immunology of cladribine’s mode of action and new data that is emerging, I would suggest the NMSS considers updating its guidelines. Lemtrada and MavencladIf...