Smouldering MS its my long-term condition
Smouldering MS, its ‘orrible
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). A significant problem for me is that no one told me what the future would be when I was diagnosed. I have been diagnosed with smouldering MS and it prevents me doing things 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 consultant 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 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 simple questions and easy answers. Some hidden disabilities such as mental issues and sexual dysfunction are complex. They need more than 15 minutes and maybe I am shy. He will always tell my GP about the visit. If I am lucky the GP puts me on the waiting list to see a consultant who can investigate the serious problem if it is a new one and hopefully provide a solution. This is all very long winded and can I build up a 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.
They slowly get worse
These problems just slowly creep up on me but I do need to be both vigilant and aware of the issues caused by MS. They are not as serious as incontinence, mobility issues or restless legs. I’m sure someone could have easily forewarned me of these problems before they became both serious and potentially awkward. Maybe physiotherapy or exercises would have slowed their impact. These hidden disabilities are bloody inconvenient and 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 which is 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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How do you write your blog? I do hope you continue, it’s so important to gain the insight and open honesty you share.
Hello Bella,
I only ever talk about my life and living with MS. I have a WordPress website for my blogs and use Mailerlite for my emails. I just write a blog when I feel the need to say something significant and keep them to about 500 words. Building up circulation is a bit of a battle. I hope that helps
Dear Patrick
Of great help. I would v. much like some advice re Giovannoni. Could I email you? Find typing here v. difficult. Best wishes, Francesca
Hello Francesca,
ProfG has retired from clinical work and just concentrating on research. Feel free to email me on [email protected] and I will try to answer your questions
Thank you Patrick…I am now in a similar situation although I don’t bother with the 15 minute consultation . I speak to MS nurse if I have a problem that needs addressing .
Please keep on posting .the longer the better .
Tessa
Hello Tessa,
I valued my consultation. It was with Professor Giovannoni (ProfG) and he was a massive help and pointed me to so many who could help me. HE has now retired from clinical consultations, such a shame.
Plenty of ideas to discuss and post but so many other things to do as well. I get distracted too easily
Totally understand the frustration. When we only get 15 minutes to say our peace and try to get what we need of medical care. A problem both in UK and USA. And the limitations of the body as a disease progresses and no one seems to know how to fix it or warn us ahead of time. Instead, time passes and bodies adjust to be frailer. We all do what we can to postpone time’s progression but it is a nwver-ending story. The story of our lives. So we must enjoy the time we have and do the best we can. And help others as only we can, those of us who have unique chronic diseases with no cure. Together, we rise!
Hello Allison,
Enjoying what I am still able to do is very important to me. MS can be too consuming so I try to forget about it when the opportunity comes up but as time goes by this is harder and harder. I do try to be as positive as possible