Last week - thank you
I did two MS roadshows last week when I went out to speak to people with MS (pwMS) in their local community. On Wednesday night, I was in Stanmore, North London, and on Saturday morning, I went to Aylesbury, in the Chilterns.
I want to thank all the attendees who asked about my health. Yes, I'm fine and have made as good a physical recovery as possible. I still have weakness and clawing of my left hand from damage to the nerves in my neck. I have a painful neck with limited rotation, and my right hip is failing and will need replacing in a few years. I suspect I am developing osteoarthritis in my neck, which is common after trauma, and typically occurs above and below the level of fixation.
Some of you are also aware that I was diagnosed as having melanoma earlier this year on my back over my right scapula. The melanoma was successfully excised, and all the lymph nodes taken out of my neck and axilla were negative. This means that the chance of systemic metastases is low, i.e. less than 1%, and I don’t need adjuvant systemic therapy. However, I am at higher risk of developing a second melanoma because of the field effect from repeated sun exposure. I have regular dermatology follow-ups; three monthly for three years and the 6-monthly for life. Soon the follow-up may be done by an AI bot (artificial intelligence robot) that will take pictures of my body and analyse my skin for suspicious lesions (new or increasing in size, etc.). This is not science fiction. I am told that this skin/melanoma monitoring system is already available in the private sector and is being trialled by the NHS. My dermatologist thinks the system will likely be adopted nationally by the NHS. Robots don’t get sick or fatigued, nor do they go on strike, and they don’t make mistakes ;-)
I suspect the monitoring of MS may go the same way, i.e. an automated pathway will arrange for you to have regular MRI scans, which will be interpreted by an AI algorithm, and if new disease activity is detected, the MS team will be notified to see if a change in medication is required. This is already happening in diabetes; patients with diabetes have photographs of their retinae uploaded and analysed in the cloud by an AI bot. If the AI bot finds anything suspicious of diabetic retinopathy, it notifies the HCP to take action. Several studies have shown that AI bots outperform ophthalmologists. I have little doubt that a well-trained AI algorithm will be superior to a neuroradiologist reviewing annual MRI scans manually.
One attendee asked me if my experience had helped me understand and improve my approach to the management of MS. I said yes, definitely, and I would suggest you read an earlier blog post on this specific issue and its relevance to MS care (‘On the mend’, 23-Nov-2020).
Flashbacks
Today (7-Nov) is the second anniversary of my accident in which I suffered a minor head injury, fractured cervical spine, shattered pelvis and numerous soft tissue injuries. Although my physical recovery has been good, what has not resolved are the flashbacks that I have whenever I hear a motorcycle approaching from behind or whenever I have to cross a road. These flashbacks are quite intrusive and are a mild form of post-traumatic stress disorder (PTSD).
I am very aware that many pwMS have PTSD about the way their diagnosis of MS was handled. If you are interested in reading about some of these experiences, I suggest you read my newsletter ‘How common is post-traumatic stress disorder in people with MS? (4-Sept-2022)’. We were fortunate enough to partner with Shift.ms to study this further by doing an online survey of its members. The results of this survey were so worrying that we submitted and presented the results at the Association of British Neurologists (ABN) and ECTRIMS 2022 meetings. We need to publish the results to raise awareness about this serious issue.
ABN Poster
ECTRIMS Poster
This work made me realise that PTSD is a serious problem, and we need to do something about it, i.e. to ensure that the next generation of neurologists learn how to tell their patients that they have MS in a way that is supportive and gives hope. We don’t want another generation of pwMS suffering from PTSD. We need an international training programme for aspiring MS experts and other HCPs on how to communicate the diagnosis of MS in a way that doesn’t result in PTSD. In parallel, we need support programmes for pwMS to deal with the emotional rollercoaster ride that inevitably comes after being told you have MS.
Don’t you think it is shocking that in 21st-century pwMS are left traumatised with flashbacks because of how they were informed about having MS? Are you not disappointed that most MS services don’t have the necessary support structures in place, similar to those in cancer services, to counsel and support their patients when they are diagnosed with MS? This is not about MS Services not wanting to provide support, but simply the NHS not having enough resources. We would love a dedicated psychologist or even an assistant psychologist or trained therapist to work with us on this issue.
Let’s make a difference so that the next generation of pwMS doesn’t suffer from PTSD.
Subscriptions and donations
Paid subscriptions to MS-Selfie are being used to administer the Newsletter and associated MS-Selfie microsite currently in development. At the request of several readers, I have now added the option of making a one-off donation. To keep this initiative open to all readers, I would appreciate it if those who can afford a subscription please subscribe. For active paying subscribers, thank you; your contribution is much appreciated.
General Disclaimer: Please note that the opinions expressed here are those of Professor Giovannoni and do not necessarily reflect the positions of Barts and The London School of Medicine and Dentistry nor Barts Health NHS Trust. The advice is intended as general and should not be interpreted as personal clinical advice. If you have problems, please tell your healthcare professional, who will be able to help you.
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