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December Update

posted 9 Dec 2012, 06:33 by Alan B.
Few days go by without something appearing in the press about MS. You may have seen coverage of information from Scottish NHS Regions suggesting that the number of people diagnosed with  MS is increasing. You may also have read about new drugs coming on stream. The trouble with newspaper, TV and Radio coverage is that you rarely get a full and accurate picture of what is going on. There certainly are more cases of MS in Scotland. But is that because diagnosis is getting better and quicker or is something else going on? 

There are new drugs emerging for relapse/remitting MS - Gilenya (Fingolomod) is now licensed in Scotland. Natalizumab(Tysabri) which is now being used by some MSers in Moray is also being tested for use with Progressive MS.  Alemtuzumablooks promising. And BG12 is also showing well in trials. Not to mention others with strange names. The MS Society is supporting investigations into two drugs licensed for other conditions (Amiloride and Phenytoin) which might help withProgressive MS. So there's a lot going on. The philosophy of www.MSMoray.net is to encourage MSers to become their own experts. So rather than relying on newspapers, it might be better to keep in touch with the Neurology service and the MS Nurse to see what's happening locally. And if you are attracted to reading about research, keep checking the research sections of the websites of the MS Trust, the MS Society and the MS Resource  Centre (MSRC). I also regularly check theMultiple Sclerosis Research blog and I subscribe to the e-mail alert service of Medscape. There are several other sources, especially on the Internet, but those above are the ones I use to keep up to date.

As well as looking at treatments and possible routes to a cure for MS, the website also focuses on what we can do to help ourselves now. One thing that definitely helps us is the Welfare State and, for some, the system of Welfare Benefits. Welfare Reform is big news and the future does look uncertain. Things we do know about are - Incapacity Benefit has been replaced by Employment and Support Allowance (ESA) and lots of Moray MSers have had to do form-filling which has proved to be stressful. And Disability Living Allowance (for those under pension age) will be replaced next year by a new benefit called Personal Independence Payment (PIP), and there will be more form-filling required. Last week I met with the Manager of the Moray Citizens Advice Bureau (CAB) to talk about how Moray MSers could be helped with applications, forms and dealings with Government Agencies. We came up with lots of good ideas and hope that progress can be made before the changes begin. She also offered to come to a Support Group Meeting to brief us. Watch this space!