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Support, help, advice & information for Multiple Sclerosis. Ask questions & share experiences with people affected by MS.


Natalizumab Trial

Posted by Nick , 03 April 2015 · 499 views

Yesterday I very nearly fell asleep in an MRI Machine.  Well it had been a long day and two years into my drugs trail, and after numerous times filling in the same old MRI questionnaire I was apparently getting pretty relaxed about it all.  A long day yesterday, arriving after a car journey at the hospital, just before eight in the morning, to be greeted by a registrar and the 'independent' neurologist keen to question and examine me before starting their own very long day.   This was the day the trial both ended and started. After two years I had reached the trail extension and it was at this point that the process became 'open lable'  That means that for the first time I am sure that the infusion is going to be the drug Natalizumab rather than the possible placebo.  I still can't pronounce the drugs name and prefer the trade name 'Tysabri'.   It felt just the same, no difference, basically nothing.  So the intriguing question is, have I been on this for two years?  Or have I been taking a placebo!   For those of you unfamiliar with all this, the unpronounceable drug, Natalizumab is a drug fully licensed for use in RRMS but is presently on trail for patients with SPMS as a possible link to improvements see in thier mobility.  Hence the fact that my monthly visit to the research department, includes various timed walks and things like the dreaded 'peg test' and 'Single digit modality test'  
These kinds of drugs are not see as any  kind of miracle cure. Described as 'Disease Modifying Drugs (DMD's) they are rather simply just that.  After two years, have I see any difference in my condition?   At present the indications are that I remain (in the whole) at roughly the same level of 'disability' as when ! first started.  At first this might not sound very exciting, yet who knows just where I might have been had I not participated in the trail?  
It would have been embarrassing had I fallen asleep in the machine yesterday, imagine that, snoring away while the thing clunked, clicked and groaned around me!  It was four P.M. when we left, heading back to the coast and home.  

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