Forum

Back to the stone age?

The son of a former colleague recently dx’d with m.s. contacted me for some advice on m.s.

He has been told he is spms and there is ‘no suitable treatment’

About five years ago he went to the doctor because he had lost strength in his leg and had trouble walking - he had a number of similar episodes.

At one time he lost the vision in one eye and he had what he now realises were other m.s. symptoms.

What is (understandably) annoying him is that instead of being fobbed off by his g.p. he should have been treated earlier. Now it’s too late.

I wonder how many others are having the same experience - showing clear m.s. symptoms but not being referred for treatment.

He might be interested in the phase 3 Simvastatin trial for SPMS.

The Cambridge University Hospitals NHS Foundation Trust is NOW an active site for the phase III MS-STAT2 Clinical Trial recruiting >1,000 people to address whether Simvastatin slows or stops disability progression for SPMS

Participants in the trial take Simvastatin or a placebo for 36 months and drug effects are assessed by clinical examination only.
The trial centres are at Cambridge and at other >20 centres between UK, Scotland, Wales and Ireland.
Participants should have secondary progressive multiple sclerosis, need to be able to walk, and have evidence of significant progression within the 12-24 months prior to the initiation of the trial.

If you wish to be considered for the trial, please ask your GP or consultant to refer you to:

Dr Stefano Pluchino
Department of Clinical Neurosciences,
Clifford Albutt Building, Level 4,
Cambridge Biomedical Campus,
Cambridge CB2 0AH

1 Like

About 8 years ago I went to my GP due to numbness in my hands, which I’d had for a long time at some varying levels but always present. Being a typical fella I just ignored it, however it got to the point where I decided to see my GP, she then sent me to a neurologist who done an MRI, a few weeks later I was called back for the results, the neurologist said the scan was clear and put the numbness down to Carpel Tunnel. 2 years later and still having this numbness but now also getting weakness in my left leg I again went to my GP who again sent me to a neurologist, but this time the neuro (different one from before) looked back at the old MRI and immediately said he thought he could see lesions on the scan, he arranged new scans and a lumber punch, within 6 weeks I had my follow up appointment and was told I had MS. He actually said the old MRI scans showed lesions but “might of been a bit difficult” for the original neuro to spot !!! Looking back and now knowing more about MS I think I’ve had probably over 25 years. I can even remember having pins and needles in the soles of my feet about 25 years ago, and going to the GP’s who arranged an Xray (no MRI’s in those days), the Xray suggested a possible bulging disc, but I think it was the start of the MS, but in those days MS was probably not heard of. Personally I think the first neuro should of spotted those lesions 8 years ago.

I’ve signed up for this trial.

They have a few clinics around the country taking part, but it hasn’t actually started yet, at least I don’t think it has ?

I applied via the same link as above, but have an appointment in a week or so with my own clinic who are part of the trials so I’ll also mention this to them.

1 Like

I think this is happening more and more. In spite of our currently living in the age of effective DMDs for RRMS, GPs don’t refer to neurologists, neurologists take forever deciding that it’s ‘not’ MS, in spite of there being a possibility that it might be. We only have to haunt the newly/un diagnosed forum to see that people are still remaining in limbo for too long.

So by the time of conversion to SPMS, it’s been too late for DMDs to prevent disabling relapses.

It’s bloody sad for the people for whom this is a reality.

Sue

spot on Sue. It’s absolutely appalling. Can’t think of any other treatable condition which goes untreated. I believe that the protocol in the USA is to offer DMT as soon as m.s. is suspected i.e. after an initial episode. When I first started with m.s. I was fobbed off initially - very frustrating but made no difference as there was no treatment available. If it happened to me now I’d be bloody furious.

I was diagnosed in 2012 after a significant brain stem attack changed my life completely, literally overnight. In 2002 I had some sort of episode whereby I couldn’t see properly, had weakness down one side and some cognitive issues. After having an MRI and lumbar puncture, I was told, by a neurologist, that I was attention seeking to get time off work from a job that I was struggling to cope with. None of which was true. I got sent to see a psychiatrist, the purpose of which was never explained. I had umpteen health issues over the next few years but unsurprisingly, I never sought further help. Until 2012 when I had little option after an ambulance took me to hospital. I saw a neurologist who had my MRI and LP from 2002 both of which clearly indicated, in his opinion, MS and he was at a loss to explain … furious, devastated, let down and so upset doesnt cover it. I had been married for just over a year at this point and felt terribly guilty about what we now had to face as a couple.

The trouble is that MS is a tricky disease to diagnose and many symptoms can also apply to other diseases, so rushing to judgement isn’t particularly wise. A study in Denmark revealed about 20% were misdiagnosed and this was only established on post mortem.

Apparently a woman was incorrectly diagnosed with MS and put on Tysabri to treat it, with tragic PML consequences.

This video by Professor Giovannoni explains the difficulties involved.

1 Like

Yup, I was also fobbed off by my 1st neurologist. I was told (1991) there were no appropriate drug therapies and I should ask for a course of steroids when I had a relapse.

Thank goodness he retired, the next 2 local neuros had a similar approach, but after talking with another person who has MS I found a more enlightened neurologist who actually listens. I now have confidence that if there is a drug or trial worth trying he will let me know.

Mick

My GP fobbed off any symptoms for years and even has said I “had very good recovery times” she always blamed any symptoms I had on other factors other than ms, symptoms I know now could have been ms.

All Doctors work on the principle of “if you hear hoof beats think horses not zebras” however I also stopped blaming ms for everything and didn’t always run down the surgery with stuff, so my gradual progression was not noted even by me! It was only when I found it took well over an hour to pop to the local shop (it should’ve been less than half that) and I couldn’t get there and back without constantly stopping both ways, that and my lousy coordination seemed to be getting worse that I raised it at the Drs’

I can’t say for sure I wouldn’t be SPMS now anyway if I’d been pushy years ago, but I don’t think I’d have been a candidate for any DMDs because when a GP makes up their mind “it’s not your MS” I think you’ve got sod all chance of persuading them otherwise.

The Dr G You Tube video is brilliant. He’s not the greatest speaker, but packs in a lot of information. I love Dr G. Such a lovely man. And I learnt quite a lot from just that one video.

Thanks for that.

Sue

1 Like