Penultimate visit for the MS SMART drug trial

Penultimate visit for the MS-SMART drug trial

Pills and capsule for MS SMART trial

My penultimate visit for the MS SMART drug trial was always going to be a very short visit. Replace the old pills with a new set. These will then see me through for the final six months of the trial. I also give some blood, how I hate injections, I even have to shut my eyes and look away. Finally answer a few simple questions about my health.

Penultimate visit for the MS SMART drug trial

It was all over in less than 30 minutes.

Oh yes talk of my final visit

The last appointment in week 96 for the MS SMART trial is going to be an all-day appointment in November. I’ve got to bring a packed lunch. I have to undergo a 90 minute MRI scan. There is also going to be a range of tests of my eyes, cognition and memory.

The mother of MRI scans

The thought of lying still in a cigar tube of an MRI Scanner is scary. Will I manage to fall into a semi-comatose state? How can a machine make so much noise and not scramble my brain? Its all a total mystery to me.

I was diagnosed over 22 years ago and I still have not seen an MRI scan of my brain and spinal cord.

Do I want an MRI scan?

That is a different question and I am not too sure. In many ways I would rather not know how much of my skull contains empty space. I know full well that my MS is progressing.

My MS progression is slow

I retired five and a half years ago. Then I could walk at least two hundred metres with just one walking stick. Today there is no chance of walking even five metres with two sticks.

A placebo

Am I on a placebo? I don’t think so. I feel no different, my concentration is still good but my vision has deteriorated. Apparently some people on the trial do know that the drug they are taking is not a placebo.

The trial ends in April 2018

The trial organisers will publish a report in autumn 2018. Now here is some good news. If one of the drugs improves neuroprotection then I will have the option to get a prescription and start taking the drug on a regular basis. This is no cure instead it will only slow down the rate of progression.

Best part of the day my 

Going to an appointment for MS SMART always reminds me that I have MS. This disease has totally changed my life and not always for the best. Guess what? I do not want medical retirement, no employment nor dependence upon someone else.

Whizzing round the streets of London

Getting onto my Travelscoot and going somewhere gives me freedom. I can forget I’ve got MS. Suddenly I’m not disabled :-). Yes being on a drug trial helps me to feel better, gives me hope. The best freedom comes when I ride my Trike. It is a bit battered and scarred but MS disabilities simply melt away when I’m riding it.

May 2017

neuroprotection, MRI scan, slow down, MS disabilities, rate of progression

4 responses to “Penultimate visit for the MS SMART drug trial”

  1. Judy Epstein says:

    How does one apply t be on the trial? Many thanks.

    • Hello,

      MS-SMART stopped recruiting a year ago. Go to MS Society page and put your name down for Simvastatin trial, recruiting will start in Autumn; warning its a 3 year trial and I do not know recruitment parameters. General tips, keep in touch with your consultant who ought to know what’s going on. Also keep an eye on the MS Trust, MS Society and Barts MS Blog websites

  2. Richard Leakey says:

    When I was diagnosed it was said that my spinal chord had lesions and my lumbar puncture fluid was essentially clear. Would an MRI today show that my spine lesions were worse and my spinal fluid was not as clear as previously? Certainly, my mobility has reduced quite dramatically over the MS years. Can one get a back up MRI scan? I like scans because you can lie down! The MS smart trial-sounds good. Lets hope something works for progressive.

    • Hello,

      You need to talk to a consultant about lesions and spinal fluid in detil. A lesion showes damage occuring to the myelin sheath (I think). So an MRI might show lesions and it will also indicate shrinkage of the brain and spinal cord because of damage to the myelin sheath that has not neen repaired. The MS-SMART trial is looking at change to brain volume as a way of assessing the success of the drugs. I hope I have got that right and it helps

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