Over the past two years, i have been taking part in a clinical trial. It is to ascertain whether high dose biotin is effective in the treatment of progressive Multiple Sclerosis. The pharmaceutical manufacturer, medDay, are considering the slowing of the condition (therefore delaying prospective disability) and also possible myelin repair when taking the drug.

I have been taking three pills daily, one in the morning, one at lunch and one in the evening. medDay have been tracking my steps via a Fitbit device and my visits to Salford Royal Hospital have included interviews, EDSS tests and intermittent MRI scans. It is a “double-blind” trial, which means that neither myself nor the doctors know whether I have been taking a placebo – or the real drug.

After 1000 steps I like like I’ve done 100,000

However my last visit to the hospital was last week when I was given the real thing!

This is a late phase trial, which means that it has already been shown to be effective in preliminary tests. Hopefully this means that there may be a new drug on the market soon for progressive MS and I am now taking it.

NICE are notoriously slow to enact new legislation and license new medication, which is very frustrating, especially with a condition like progressive MS where the passage of time is literally your enemy.

But hopefully I’m now on the path to recovery or at least stability. Fingers crossed!


tom_llewellyn

Hello! My name is Tom Llewellyn and I’m a former long distance runner. In December 2010, I was diagnosed with relapsing remitting Multiple Sclerosis. Several years later in November 2017, I was re-diagnosed with a progressive form of the condition. I now use a walking stick to get around. I write about my journey with the condition of MS – and also of life – documented over the course of several years. Much of the subject matter is about my scars and my healing. Not forgetting Public Enemy and DJing!