If you have been newly diagnosed with MSA it can be hard to make sense of what this actually means for you and those you love.
We hope that the information we provide will help guide you in these early days. However, from the experience of other people who have been through this in the past, there are certain tips that might help you with coming to terms with things and taking more control of events.
These are summarised below, but if you find anything else that has been particularly useful to you in dealing with a new diagnosis please let us know so that we can share this more widely:
- Try not to read everything you see about MSA – you may become overwhelmed and it can be hard to ensure all information is accurate
- Our MSA Nurse Specialists can offer individual information and are used to supporting people who are newly diagnosed
- Ideally try to see your neurologist or specialist every six months for a review
- Ask your GP to refer you to your local Parkinson’s Nurse Specialist (PNS) if there is one for your area. They work alongside the neurologist and will also look after people living with MSA. They have a good knowledge of MSA and will be able to advise you on appropriate medications and oversee any medication changes. They also know about support you can access locally, and can liaise with the Trust’s MSA Nurse Specialists if needed.
- It can take time to get arrangements in place. If your neurologist or specialist hasn’t already done so, ask your GP to refer you to a physiotherapist, an occupational therapist and a speech and language therapist. You may also wish to ask for a referral to a continence nurse advisor if you are experiencing bladder or bowel issues. If your GP isn’t familiar with MSA, please feel free to give them the Trust’s MSA Nurse Specialists contact details. You may want to email these to them, or download our details for passing on to them the next time you see them.
- You will find that many professionals are unfamiliar with MSA as it is a rare condition. They will learn from helping you, but we can also provide them with a range of information that will improve their knowledge. If you let us have details of professionals involved in your care, we can send them some information. If you have not yet joined the Trust (there is no charge), please complete our short form and we will forward details to your health professionals.
- If you do not wish to become a member but would still like us to forward details about MSA to your health professionals, please send details to us at firstname.lastname@example.org.
Please remember that not everyone with MSA will have all the symptoms listed on our website. Everyone living with MSA is individual. The Trust is here to help you, and those supporting you, so please make contact with the Trust’s MSA Nurse Specialist covering your area to ask any questions or voice any concerns you may have.