I work for the VST as a TLC alongside some ESWs. We work with LAC (or CLA) and we are always ready to provide a quick response to NIC. I have particular responsibility for EY LAC and we have regular contact with professionals from CSC, SEN and BSS. Acronyms are everywhere!
The world of MS has them too, although most are FLA! I thought I’d share a post about some of the acronyms and vocabulary used in MS.
MS – Multiple Sclerosis
CIS – Clinically Isolated Syndrome: A single attack (or “Sclerosis”). Many with MS are diagnosed with this following their first attack or relapse. For some reason, I was initially diagnosed with two episodes of CIS (which seems somewhat contradictory to the meaning of the word “isolated”!).
RRMS – Relapsing Remitting Multiple Sclerosis: MS which is characterised by attacks or relapses alternating with periods of stability. Some neurologists argue that! with MS, there really is no period of remission, therefore using the word “Remitting” is misleading. I am currently recorded as having RRMS.
RMS – Relapsing MS: Being used by some neurologists instead of RRMS
PPMS – Primary Progressive MS: a presentation of MS characterised by continuous progression, with no relapses or periods of remission. 10-15% of new diagnoses of MS are of PPMS.
SPMS – Secondary Progressive MS: around 50-80% of those initially diagnosed with RRMS will become secondary progressive at a later stage. I recently asked my neurologist if I was secondary progressive and he replied “well, you’re certainly on your way there”.
MRI – Magnetic Resonance Imaging: used to view the health of the brain and spinal cord to aid diagnosis and monitor progression of MS.
DMT / DMD – Disease Modifying Therapy / Disease Modifying Drug (These terms seem to be used interchangeably so I assume they have the same meaning)
NEDA – No Evidence of Disease Activity (what we’re all aiming for!)
HSCT – Haematopoietic Stem Cell Transplant
AHSCT – Autologous Haematopoietic Stem Cell Transplant: an Autologous Transplant is one in which the recipient’s own tissues are returned to the body. Allogenic describes transplants where tissue is donated by another. Allogenic Stem Cell Transplant is considered far too risky as a treatment for MS.
CNS – Central Nervous System: the brain and spinal cord
CSF – Cerebral Spinal Fluid: This is the fluid that surrounds the brain and spinal cord. CSF is extracted during a lumbar puncture (or spinal tap) and can be tested and examined in a number of ways. Most people diagnosed with MS have “Oligoclonal Bands” present in the CSF at a higher level than in the blood. I had a lumbar puncture in 2017 which identified the presence of oligoclonal bands and confirmed my MS diagnosis.
PwMS – People with MS
NICE – National Institute for Health and Care Excellence
EBV – Epstein-Barr Virus: A common virus that causes glandular fever. I have included this as there is growing evidence that exposure to EBV may be a contributing factor to developing Ms for some.
EDSS – Expanded Disability scaled Score: Used to measure disability in MS. A recent neurologist letter records my EDSS as 6, however I feel it is nearer 5.
TTFN xx