Tuesday 4 August 2009

MS Trust open door

open door is the quarterly newsletter from the MS Trust. It largely reports on research results and the like, but despite this, is very readable. The current issue (just arrived) deals with posture, depression, misleading stem cell treatments and the impact of progressive MS on family life amongst other things.

Items that caught my eye:

Prevalence of MS in the UK may be as great as 100,000 people, not 85,000 as previously thought. The figure was arrived at after studying codes indicating an

MS diagnosis from GP records. Considering the fact that I consulted my GPs with vertigo and optic neuritis symptoms in the four years leading up to diagnosis, without mention of MS, this rings true.

Oral treatments for relapsing/remitting MS take a step closer with the National Institute for Clinical Excellence (NICE) announcing that fingolimod and cladribine will be included in their next round of appraisals. Both of these drugs have shown positive results in trials so far, but some safety issues need further research. I don't think I need to say that I would welcome disease modifying therapy in tablet form, do I? The thrice weekly ritual of warming up syringes and choosing injection sites is a real bind. I don't know what side-effects are associated with these drugs.

MS patients sweat markedly less than people without MS. I would guess that this isn't the case with all people with MS, just as not everyone has the same line-up of symptoms. Heat aggravates MS symptoms, so I also guess that a sweating impairment could begin a vicious circle of overheating.

If you are living in the UK, you can sign up to receive open door on the MS Trust website: www.mstrust.org.uk

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