Smouldering MS, further news
Does smouldering MS look like this?
Smouldering MS is defined as a gradual worsening of MS disabilities without relapses or new lesions showing on an MRI. An MS expert would describe this as PIRA (Progression Independent of Relapse Activity) ie no relapses. A significant problem for me is that no one told me what the future would be when I was diagnosed. If only … is a question I ask myself when I look back on my disabilities.
Smouldering MS
SPMS was diagnosed in 2000, smouldering MS in 2023. Now I cannot do activities that once I took completely for granted. It has a profound effect on my physical and mental well being. I think only those who have smouldering MS fully understand the ups and downs of living of the disease. Rest assured MS causes a plethora of problems and there are subtle differences for everyone as well.
When I was diagnosed in 1996
My MS started in 1972. I suffered a bladder problem, hesitancy and urgency, I now have Botox injections. The neurologist who diagnosed me in 1996, because of double vision, told my GP that I was already showing signs of foot drop. He only told me that MS is an incurable disease. Now, 28 years later I have chronic drop foot and drop leg; I cannot lift my left leg off the ground and I have no sense of balance. Do you think he realised this was going to be the eventual outcome? I also have numerous other disabilities, the majority are hidden.
Annual consultation
Every year I tell my MS consultant my 3 most serious problems for my annual 15 minute consultation but some are too complex to discuss. Mobility, balance bowel and bladder problems are straight forward with easy questions and answers. Some hidden disabilities such as mental issues and sexual dysfunction are complex. They need more than 15 minutes and maybe I am shy as well. He will always tell my GP about the visit. If it is a new problem the GP puts me on the waiting list to see another consultant who can investigate and hopefully provide a solution. This is all very long winded, and can I build up a good relationship with the new consultant?
Some problems never discussed
Smouldering MS affects my left-hand side much more seriously than the right. Not a terribly serious problem except that I am left handed. Quite suddenly I realised that I could hardly hold a pen to write. Not a major catastrophe because we all tend to use a computer but there have been some embarrassing moments. Slowly I am learning to be right handed. Holding the breadknife with my right hand to cut a slice of bread is still a challenge but I an slowly getting there. Resolving this problem does not need a medical expert. An OT might help me.
Smouldering MS
Sometimes the problems are not appreciated or understood. A company converted the bathroom for our new house so it is accessible, no steps and it has numerous grabrails. They supplied a shower seat that was totally unsuitable, flat seat without arm rests. I told them to change it for one with a cushioned seat and arm rests, so much safer. I have no desire to be picked up from a hard tiled floor with a dislocated shoulder which could easily have happened to me if I had just accepted the original shower seat.
Problems slowly get worse
The problems slowly creep up on me but I do need to be both vigilant and aware of the new MS issues. They are not all as serious as incontinence or mobility issues. I’m sure someone could have easily forewarned me before they became both serious and potentially awkward. Maybe physiotherapy or exercises could have slowed their impact. These hidden disabilities are bloody inconvenient and can make my life embarrassing and difficult. Its all part and parcel of living with smouldering MS and its not a laugh a minute.
Possibly good news
The drug tolebrutinib has been licensed by the EMA (European Medicines Agency) for non-relapsing SPMS, the same as smouldering MS. The drug is designed to cross the blood-brain barrier to target smouldering neuroinflammation, which drives disability even when relapses aren’t occurring. In the UK it requires approval by MHRA and NICE and there could be limitations on who is eligible.
May 2026
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