Although the diagnosis of MS will be a shock initially, many people can live well with the disease and even prevent its progression. By equipping yourself with the right information and a strong team of support people, you can take control of the management of your MS and live your best life.
Make sure you are familiar with the many assistance and support options that are available to you. Whether it be financial assistance, advocacy support, employment information, NDIS support, or access to health professionals, you are not alone in the management of your MS.
MS Queensland can connect you with all of these service and information providers, and answer any other questions you may have.
Many people who live well with MS don’t consider themselves as having a disability, and therefore don’t think that the NDIS is relevant to them. The NDIS offers support for people who have an impairment that effects their daily function. This means you may be eligible for assistance with cleaning your home or maintaining your garden. Or if your MS impacts your mobility or social interaction, assistance may also be available to you. For more information you can:
Read the NDIS information provided on this website
A neurologist will have confirmed your MS diagnosis but it may help to understand your options when it comes to choosing a neurologist for the long term. Your neurologist will play a key role in the ongoing management of your MS so it’s important you feel comfortable about this choice.
There are different types of neurologists. General Neurologists support people with a wide range of neurological conditions, while others specialise in one or a few conditions. If they specialise in MS in particular, they are known as MS specialist neurologists. Not being an ‘MS Specialist’ Neurologist does not in any way mean they cannot diagnose, support and treat MS very well. You do have a choice in who you see, but this can be limited by many factors such as where you live, health insurance, and the availability of private or public neurologists and their potential ‘waiting-times’.
One of the main advantages of seeing a neurologist privately is that you see your neurologist every time you attend their clinic. They will often (but not always) have shorter waiting times for new referrals to their practice. You should also be able to contact their clinic directly if you have concerns about changes in your MS. Choosing a private neurologist also typically means you will have out of pocket expenses for consultations, and sometimes for tests such as blood tests and MRI’s. You can call a private neurologist’s clinic to ask about their waiting times and their fee structure. If you have private health insurance you should check the policy details to confirm your benefits and hospital access.
If you are referred to a public hospital service, you typically won’t be able to choose your neurologist. You also may not see your neurologist at each appointment, as clinics are supported by junior doctors who are supervised by and report to your neurologist. You may also find that speaking to your neurologist when you have concerns about your MS may be quite difficult. However, a neurologist consultation in any public hospital is covered by Medicare and typically no out of pocket expenses are incurred. The cost of blood tests and MRI’s are also covered by Medicare, however MRI’s in particular usually have long wait times. Some of the larger hospitals in Queensland are now offering MS Clinics, where people with MS are seen in the same sessions and referrals are often directed to a specific neurologist.
Regardless of whether you choose a private or public neurologist you will require a referral from your GP. A referral to a private neurologist needs to be addressed to a specific doctor. Your GP may have neurologists they have worked with before, or you may have a neurologist you wish to be referred too. Referrals to public hospitals do not need to include the name of a specific neurologist however the more detail your GP can include the better. This because referrals to public services are categorised based on the information provided in the referral. This can mean the difference between waiting a few weeks or many months for an appointment. Queensland Health also works on ‘catchment areas’ so referrals can only be sent to the nearest hospital offering neurology services.
Your needs will change over time but it helps to know what support is available to you. You will already be familiar with the role of your neurologist and your GP, however there are many other allied and community health professionals who offer specialist MS services to help manage your symptoms. These can include:
As more research and clinical trials are undertaken, the ability to live well with MS continues to improve. There are many ways you can take control of your health and self-manage your symptoms. You may also benefit from joining one of the many MS Support groups who offer friendship, support and self-help in your local area.
