Most people end up seeing their local hospital’s neurology consultants. This can be a very hit and miss affair. It is possible, using a good search engine, to find Consultants with a specialist interest in peripheral neuropathies, sometimes looking for a “neuromuscular specialist” can be helpful.
The Muscular Dystrophy Campaign has Care Advisors who can often help and liaise with local Doctors. Unfortunately there aren’t many MDC care advisors. It can be helpful to talk to these advisors as they have a good knowledge of the care available in their regions.
The MDC support HMSNs (Hereditary Motor Sensory Neuropathy) HNPP falls within this group. The other name for HMSNs is Charcot-Marie_tooth disease, or CMT for short. Clinically HNPP may not actually present as a classic CMT case, but HNPP is an HMSN… regardless of naming conventions, the MDC does support HNPP.
Help and support can also be found at the CMT UK group. This is a charitable organisation and has been in existance since the early 1990s. In this internet age, most of their information can be found online, but many offline activities and local groupd exist.
Their website can be found here,
This week is CMT Awareness week, it is the first one that CMT UK have organised, hopefully there will be many more.
Finally, a link hich maybe helpful for finding those elusive specialist neurologists. The Dr Foster website has been running for a few years and can be used to search for specialists consultants or Clinics. From their blurb,
Dr Foster is the UK’s leading provider of comparative information on health and social care services.