Wednesday 27 March 2019

Interesting Things - Part 2 (diagnostic and nerve growth)

Nerve re-growth

One story caught my eye earlier, that the human brain may regrow nerve cells throughout its life. So I only see this as a news story (https://www.sciencenews.org/article/new-nerve-cells-adult-brains) Re-growth of nerves sounds very positive - of course, for HSP we'd be after the very long nerves rather than just those in the brain.

Some hunting around suggests that there is some re-growth in the spinal column as well - with one patient with SPG4 potentially showing some re-growth (https://hspersunite.org.au/huge-french-study-of-spg4-hsp/)

Diagnostic flowchart

The European Reference Network for neurological diseases (http://www.ern-rnd.eu/) has recently published a disgnostic flow-chart for HSP: http://brain-team.fr/ern-diagnostic-flowcharts/

This flow chart first asks if you have gene panels or genetic sequencing available. If you have then use this, otherwise only test for SPAST/SPG4 (unless you additionally have ataxia). Beyond this it is a diagnosis of exclusion - and a long list of tests which could be done and other things to look at have been suggested to end up with an HSP diagnosis if all other things have been excluded.


Drug re-classification

Some of you may use Gabapentin or Pregabalin for your HSP. If you're reading in the UK these two are changing their classifications, they will (from 1st April) be "schedule 3 controlled drugs" which means that you may have more difficulty getting hold of this medicine. It seems that additional information needs to be given on the prescription, the amount you can receive may be reduced, and getting repeat prescriptions may be more tricky.
https://www.england.nhs.uk/publication/rescheduling-of-gabapentin-and-pregabalin-as-schedule-3-controlled-drugs/

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