Do you know I have smouldering MS
Smouldering and wastage by Valeriia Harbuz
I have smouldering MS. Multiple sclerosis first struck in 1972 when I was only 18. My bladder let me down on several occasions in the next 10 years. I didn’t speak to anyone about this problem, young men do not like going to the doctor. Big mistake, but I doubt if anyone would have made the link with MS. S0uldering MS is a huge problem and to many people a big mystery.
A diagnosis
I was diagnosed with MS in 1996 because of double vision, I now began to live in a state of denial. Why should I worry, diagnosis did not suddenly change my life. There was no internet or Dr Google. In fact there was virtually no information available except that MS was incurable.
In 2000 my diagnosis changed from RRMS to SPMS but this did not trouble me as I was not eligible for any drug treatment. I was still working, driving and helping my wife to bring up 3 children. MS was a diagnosis that I ignored ‘cos MS was not affecting me.
In about 2003 things began to change
It all started when I tried to run across a zebra crossing but I could do no more than walk. I mentioned this to MrsB but we both forgot about it and anyway I never enjoyed running. A couple of years later reluctantly I had to stop dog walking, the ground was too uneven and I ran out of puff. I did not link these problems with MS. Things slowly went down hill from then. MS now started to affect my life big time.
I have smouldering MS
I had to take medical retirement in 2012, lack of energy and poor concentration were the big culprits. Applying for and receiving DLA (disability living allowance) was a game changer. I could no longer lift my 25 Kg Travelscoot onto the train, instead I had to use a ramp. My consultant pointed me to the walking clinic in Queen Sq, part of UCL They supplied me with an FES (functional electrical stimulator), it eliminated foot drop but didn’t help my balance. Soon I graduated to a dual channel FES because of leg drop. These problems didn’t all happen at the same time, Instead it was it was a drip-drip of increased disability and there wee others as well.
Next up was Botox for my bladder, another game changer. No more subtly looking out for a loo in case my bladder decided to develop a mind of its own. A regular occurrence that was both embarrassing and humiliating.
In 2016 I started to be a little bit constipated. Nothing serious but something that had never happened to me before. Within eight years I had tried every remedy but the only solution is Peristeen or anal irrigation. Another game changer to significantly improve my quality of life.
MS takes away chunks of my life
Everyone takes daily activities, such as walking or going to the loo completely for granted until something like MS gets in the way. I’ve suffered from MS for over 50 years. No professional admits to being capable of predicting the next disability, when it will strike and its speed of destruction. Currently there is no cure for smouldering MS so I must just battle on.
August 2024
You have my sympathy, Patrick!
I have COPD & emphysema, along with a dodgy aorta, prostate and a few other minor defects such as gout.
So I spend most of the time with an oxygen catheter hooked up to my nostrils, make my way upstairs once daily when I go to bed, urination through the day is with the assistance of my wife into a tube into a bottle.
I had three bits of scares in the past few years, CT scan led to discovery of nodules on my left lung and video discussions with an oncologist who observed that my lungs were too shot to stand operation but he might be able to zap them with a high intensity radiation beam.
But as luck would have it the PET scan indicated they were not malignant and the next CT scan indicated they have shrunk a bit.
Then we came to the prostate, frequent nocturnal urination not good for sleep, more scans and prodding around by a nice young lady with a prominent Macmillan badge for added interest.
However, some medication seems to have fixed that, only get up once or twice per night now, acceptable.
I went for a DEXA bone density scan a year or so ago, recommended due to living on steroids and antibiotics that was quite amusing.
The nice young lady inspecting the X-rays asked “when did you break your back”?
To which I answered “I didn’t know I had!”.
A further X-ray revealed an old break of a T8 vertebra, which I put down to the motorcycle racing I indulged around half a century or so ago, when I broke quite a few things, often continuing to race notwithstanding.
So, pills by the handful lots of oxygen, a nice tot of decent malt every evening, things could be worse.
I can still drive and I get out most days on the trusty Scoot, one of my daughters will be visiting this weekend from Southend and my wife and I hope to visit the other in Pembrokeshire in a few weeks.
So don’t give up mate, you’re not alone!
Cheers, Dave
Hi Patrick, I have secondary/smouldering, dx in 1987. I lived in woolwich/Greenwich area for 40 yrs then 8 in Kent and now up north. Good to hear you escaped from se18, it was going downhill when I was there in 2008 before all the tower blocks went up. I,ve got an aunt in Faversham, I’ll have to work out how close [I,ve never been there]. Hope everything goes OK down there.
Hello Ivan.
Interesting life you have led. Woolwich is getting more and more gentrified, property prices sky high and Royal Arsenal full of overpaid city workers. Elizabeth line has transformed area. Like Faversham but only been here for about 3 weeks. Faversham is 1 hour by train, St Pancras
Talk soon