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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 , 15 January 2015 · 609 views

My original two year trial into the use of Natalizumab in SPMS comes to an end very soon and I have just completed my last major session of attendance, completing many of the subsidiary questionnaires, tests and examinations.  Monday was a challenging day for me, arriving at the research department of our local main hospital at 10 in the morning, and  only getting clear by 6 in the evening.  A long long day!!!   I have also now decided to participate in the continuation trial, where I know I shall be taking the real drug. At present the trial is a, 'double blind placebo', based trial, so for the last two years I have not known if I have really been on the drug or not.  
Much of what I read from people who are only just in the process of diagnosis indicates that most people are looking for some kind of defining 'label' of what it is, that is causing the problems, and of course from that they may also feel that this will see them placed on drugs treatments that will make them better.   What has become increasingly apparent to me is that the overall condition known as  'MS' is simply not like that. Talking to neurologists during this trial, and still trying to gain a better understanding of my own MS, I now realise more than ever before the huge problem that the specialists face.
When diagnosed in 2008 I had an EDSS level of 4.5. ( http://www.mstrust.org.uk/atoz/edss.jsp ) At the start of the trial two years ago I had an EDSS of 6. During those two years this level has fluctuated between 5.5 and where I am currently, which is 6.5.  As a positive person I see this as a plateau,  two years of stability.   Good news if I find that I have been helped by the drug, but of course I don't know this!  On the other hand, perhaps my 'version' of MS has simply  not progressed very fast anyway.
In the next few months I shall start the real drug and get away from this uncertainty, yet even here there is a dilemma!  You see the use of this drug in SPMS IS only at the trial stage and it may well not make much difference anyway to the rate of progression. It was never claimed to be any type of 'Cure'
Neurologists face this every day. While they are giving increasingly accurate and speedy diagnoses, thanks to ever better technologies,  a diagnosis is still only that.  It does not tell them anything much about how the disease may progress in future, in an individual patient. It may over the first few years indicate  a better diagnosis' or better definition of a 'class of MS' but all that is of little help to the patient.  Of course there is much more to the work the neurologist does and much more in the management of MS that can be of enormous benefit to a patient.  In other works, what I have learnt by being on the trial is that there are no quick answers, no quick fixes.  That is not to say that I'm negative about it! Quite the reverse!   Modern drug therapies do work and knowledge about management of MS makes a huge difference to the way you should see yourself and this disease.  Being on a drugs trial also has a lot going for it and while there may be a potential increased risk, I feel this is far outweighed by being able to be close to where the real action is !

Glad you managed to make a decision Nick, I doubt it was an easy one. Wishing you all the best in your new trial, hope you remain plateaued or even improve!
A thank you is on order as well as it's brave people like you who pave the way for us all walking up the path behind you (if that makes sense!).
Laura :-)

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