How to approach your GP
HSP Support Group members share their advice on how to approach a GP:
Ataxia is an umbrella term that includes Hereditary Spastic Paraplegia (HSP) and Multiple Sclerosis (MS). HSP is a rare condition and it can be useful to use the term Ataxia when looking for support.
Ask for a referral to a Neurological Centre. There are more than 20 neurological centres around the UK. Your GP will know how to refer you to a specialist in one of these centres.
There are also two Specialist Centres in Sheffield and London.
- Sheffield will see you without a referral from your GP – Dr Channa Hewamadduma, University of Sheffield, firstname.lastname@example.org
- London requires a referral from your GP - Professor Nick Wood, National Hospital for Neurology, London.
Paraplegia or Paraparesis?
HSP is often called Hereditary Spastic Paraparesis, and there is no difference between these two names. Occasionally you may find HSP called Familial Spastic Paraplegia or Familial Spastic Paraparesis, and again, there is no difference between these names. Some specific types of HSP also have their own names. If you do not understand, ask for this to be explained.
In advance of seeing your GP it may help you to think about which questions you want to ask them, and we suggest writing these down beforehand. You may wish to ask a friend or relative to join you at your appointment to help take notes or seek clarification.
If you are worried about any of the HSP symptoms you can ask your GP about these, and what options you have, which could include medication, mobility aids/devices or other options. The most common symptoms for HSP are spasticity, pain, bladder incontinence and fatigue. Many find that they have low mood with HSP. It is useful to remember that you can have HSP at the same time as other health conditions. Although there are other symptoms that may be related to HSP there are many symptoms which will be unrelated to HSP.
It is worth asking about stretching and cardiovascular fitness, and seek advice on what is best for your situation. You may benefit from a referral to a physiotherapist or a neuro-physiotherapist.
If you have not a formal diagnosis of HSP, or a genetic diagnosis of HSP, then you may wish to talk about this with your GP and understand why your diagnosis is uncertain. Genetic tests are available for many (but not all) types of HSP, and a referral to a genetics team may be of benefit. In the absence of a genetic test result and family history, the diagnosis journey is often to eliminate other conditions which are similar to the early stages of HSP.