Multiple sclerosis has its lesions and inflammation
MRI of brain with MS lesions in bright white
Just when you think there is a glimmer of hope, a tiny twinkle of light at the end of the tunnel, it is surprising how easily that little spark of optimism can be extinguished. Life with nearly every single Long Term Condition can be really rough. Multiple sclerosis has its lesions and inflammation. This causes the damage that leads to disability. I exist in a bubble where there is no cure just a bit of hope things might get better. A little bit of hope that the progress can be slowed down.
Barts MS health
About a year ago, summer 2017 I heard about cladribine. It is prescribed as an off-label drug by consultants at Barts MS health for people with secondary progressive MS. It is a drug available for people with hairy cell leukaemia and nearly all the patients go into remission. This is an injectable version of the drug and is as cheap as chips.
2018 My journey
The consultant at Barts MS health was quite happy to prescribe this drug to me but first of all I had to complete the MS SMART trial. Then I could have a lumbar puncture in February followed by an MRI scan of my brain and spinal cord in April of this year. A few days ago, mid May, I received an appointment to see the consultant at the Royal London hospital in London at 2 in the afternoon on 16th May.
It worked out rather well
I already had an appointment in Queen square at the Walking Clinic that morning. When that was over I rode my TravelScoot across London to Whitechapel to see the MS consultant. The journey took me just over an hour and I enjoyed it. I load up Google maps onto my phone and travel across London on The Trike. It’s a really nice way to see London but that day it was a bit chilly.
Multiple sclerosis has its lesions and inflammation
The allotted time arrives for my appointment. The consultant calls me through. Inevitably there are two or three medical students and the MS nurse present but I ignore them. I’m in a good mood, off-label cladribine should stop progress of my MS.
We say our hellos and then he says “I’m afraid I can’t prescribe cladribine to you”.
“I have looked at your MRI scans and the results of the lumbar puncture. Multiple sclerosis has lesions and inflammation but you have not got enough for me to prescribe off-label cladribine”.
“But, but hold on” I stutter. “I do have multiple sclerosis don’t I?” He nodded as my chin thudded onto the floor but I managed to keep my composure. The tiny little light at the end of the tunnel had been extinguished. His decision was final and absolute.
I picked myself up and trudged out of the clinic. I caught a bus back to Euston station and I sent a WhatsApp to MrsB. Her reply was succinct – “Shit”
Time for reflection
Going back home on the train time I had a rethink. I know multiple sclerosis has its lesions and inflammation but they couldn’t find enough in me. Diagnosed in 1995 it first started, I think, in 1972 and here we are in 2018. Right now there is no clinical evidence of MS, just got to live with what has happened.
So I must be positive and thank my lucky stars, it could be a whole lot worse.
Associated posts
I have started the MS SMART trial
.
.
.
.
.
.Information you need to know.
.
.
.
.
.
May 2016
Where are these lesions and inflammations supposed to manifest in order for you to have cladbirine prescribed by these medicos?
And even if they cannot clinically PROVE the cause of your disability, why can’t a trial dose be given? If it works, do “proofs” matter?
Hello Francesca
Lesions show up on an MRI scan of the brain or spinal cord. They show where the immune system attacks the protective covering (myelin sheath) surrounding the nerves of the central nervous system. As a result of inflammation of the Central Nervous System (CNS) Neurofilaments are found in the cerebo spinal fluid and a lumbar puncture extracts a few drops of the spinal fluid which is then analysed to.
I was told that I failed to meet the criteria set by Barts MS health to prescribe off-label cladribine. Of course I can go on the MS Chariot trial if that ever gets off the ground. Maybe I’m naive but I think I would have been prescribed the drug if it would have helped. I think I need a drug that prevents neuro degeneration which was the aim of MS SMART. I’m thinking of biotin and lecithin to help me.
Proof is a tricky matter, no good giving you a drug if there is no proof that it works but there is annecdotal proof and medical or statistical proof.
Whew! I guess you had to experience it to believe it
Hello David,
Yup, a difficult one
How very interesting Patrick ..I think I may well be in a similar situation. Diagnosed in 1975 with a very serious episode when I was 16 ….then complete recovery with no further episodes or relapses for over 45 years and now suddenly morphed to SPMS ..Prof G said I was a very interesting and unusual case…but no mention made of cladribine or anything and I am sure my MRIs are also not showing enough lesions or inflammation despite my having been totalky paralysed from waist down for over 6 months when first diagnosed
Hello Tessa,
Prof G never mentioned it to me as an option, I spoke to Klauus Schmierer who seemed happy to go ahaead. Ah well that is another possibility out of the way
Thankfully you can still see losing sight makes it a whole different world. Our son got respite for a week in the local care home near where we live. First mistake – they forgot to give him his insulin. His blood sugar by evening was 36 care home couldn’t contact us we were in Inverness with one of John’s sisters we only went there in the morning. The care home managed to get his other sister who is a sister in the hospital and by then the care home had put John into the Aberdeen Royal Infirmary but Kareen went with him. The hospital couldn’t cope with John’s conditions at all they could t feed him nor give him drinks they didn’t know how to cope with John. By the time we got into the hospital next day he was distressed boiling hot had cannula in each hand had SN antibiotic drip and a fluid drip. It was the biggest disgrace I have ever seen. They wanted to keep him because they felt something hard in his tummy and xRayed him turned out he had impacted because the care home didn’t give him all his moviol. Then surprisingly they discovered he hadn’t had his insulin at the care home that was what was wrong. When we went in we were told to sort him out because we knew him better than they did so we said we were taking him home which we did after getting doctor’s approval because he went through all that for nothing just because the care home didn’t give him his insulin. The nurse responsible denied it she said she did but she didn’t. John’s MS consultant told us if John had ever to go back into hospital we had to go too and purée his food feed him see to everything because the hospitals were so short staffed they could t cope with the chronically sick and especially multiple sclerosis and type 1 diabetes. It was an absolute disgrace the state of the hospitals in Scotland because of SNP is awful our GP said hospitals now can’t cope with chronically sick. Our GP got a letter from hospital consultants stating John hadn’t had his insulin in the care home but the nurse still denies it. The main thing is to stay out of hospitals whether Scotland or England everywhere is the same.
Hello Olive,
Very brave of you to share the story, it must have been very traumatic. Hospitals are certainly not designed to look after people with Long Term Conditions once the diagnosis has been made. Shortage of staff is one of the many problems.
Shortage of staff, especially with the right training is an issue. From what you say the home is at fault, is this the right place for your son?. Hindsight is a wonderful thing but it is always too late.
I hope you do not have any more similar events