If you have been newly diagnosed with MSA, you may find the following helpful:
- Try not to read everything you see about MSA – you may become overwhelmed
- Ideally try to see your neurologist/specialist every six months for 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 specialist nurses if needed.
- If your neurologist/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 specialist nurse 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 illness. If you let us have details of professionals involved in your care, we can send them some information. If you are not yet a member of the Trust (there is no charge), please complete the short registration 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. There are lots of things we can help you, and your carer and family members with, so do make contact with the Trust’s MSA nurse specialist covering your area to ask any questions or voice any concerns you may have.