Newly diagnosed with Multiple Sclerosis (MS)
Everyone responds differently to being diagnosed with MS. For some people having a new diagnosis of MS can be very overwhelming, for others it can come as relief if they have been experiencing unexplained symptoms. Whatever you're feeling, having a new diagnosis of MS is likely to lead to lots of questions and worries.
Where can I get information?
No two people with MS are the same – the symptoms people experience will relate to where and how many areas in their central nervous system are affected. Because of this, your MS journey will be very different from other peoples'.
We suggest that you only read about things that are relevant to you. By reading things that aren't applicable to you, you may cause yourself unnecessary worry.
We have a number of pages that may be useful to you, such as:
- What is MS and what causes MS?
- Types of MS
- Living well with MS
- Telling people you have MS
- What is a relapse?
Each of these pages, and others on this website, will have links to other trusted information.
There is a huge amount of information about MS on the internet but not all of it is fact checked or evidenced based (based in science). Please bear this in mind if you are doing a search for information.
We recommend trusted information on the MS Trust, MS Society, MS UK, Shift.MS, and MS Brain Health websites.
Support from the MS Service
When you receive a confirmed diagnosis of MS, you will be referred to the MS Service who will aim to see you to do an 'Initial Assessment' within 4 weeks of receiving the referral. There are times when the wait will be longer than this.
More details about what happens at this appointment can be found in the Appointments and Clinics section.
The MS Service will be there for you throughout your MS journey. The only time this changes is:
- If you move out of Dorset/you no longer have a Dorset ICB GP
- You choose not to remain on the Dorset MS Service caseload
- Our sister service, The Community Neurology Service, would better meet your needs. (The Community Neurology Service is only available for people in South and East Dorset, Bournemouth, Christchurch, and Poole).
More information about the service, our contact details, and helpline can be found on the Welcome page.
Other support
There is a lot of different support out there for you, dependent on what you want, or feel you need.
Mood and mental health
If you have low mood, it is important to speak to someone. There is good information, tips, and links to support in our sections on mood, relaxation and mindfulness.
MS Organisations
- The MS Society has an MS helpline which gives emotional support and information to people living with MS. Details can be found here MS Helpline | MS Society
- The MS Trust has a help and information line which gives support and practical information to make sense of MS. Details can be found here MS helpline and information | MS Trust
- Shift.MS is a social network and community for people with MS and can be found here Shift.ms | Forum, Community & Support For Those With MS
- For those newly diagnosed Shift.MS can connect you with other people with MS through their 'Buddy Network'. More details can be found here: MS Support | The Buddy Network | Shift.ms
- MS Together is an organisation which provides services of advice and support to people affected by MS, with a particular focus on those living with MS aged 18-35 Welcome to MS Together
- The MS Trust also has a webpage with details of support groups which can be found here Support groups | MS Trust
- There are also local groups which may be of interest. Some of these can be found on our support networks page.
Social media and other websites
There is an ever-growing number of social media groups, forums, blogs, and websites for MS.
Forums can be a useful tool for speaking with other people who have MS, and for support. As conversations in forums will be about other people's experiences and opinions, it is important to fact-check any information you may get from these, even if they come across as fact (are they scientifically based?). This is even more important when on forums with people from different countries, as healthcare systems across the world are very different from one another.
Benefits
Benefits can help to assist with worries about money if you are affected by MS. MS Service professionals are not experts in benefits or financial advice. We do have some more information on our benefits page and there are organisations that can help you to navigate this further.
More information can be found in the following websites:
Brief Guide to MS Benefits - Financial Support | MS Society
A guide to MS benefits | Shift.ms
The MS Service is unable to help you complete benefit application forms, but we are happy to provide you with the latest copy of your MS assessment completed at Initial Assessment and MS Review appointments. Please see appointments and clinics for more details about these appointments.
Is there anything I need to do now?
A few things to note:
- It is important that you disclose your diagnosis to the DVLA. It is very common to have your license restricted which means that you may not be able to drive certain vehicles and may need to renew your license more regularly.
- Insurance can be affected by having a diagnosis of MS. The MS Trust website has useful information regarding this: Insurance | MS Trust
- Disclosing to your employer is a difficult decision. It is important to note that there are some areas of employment where there is a legal requirement to disclose that you have MS. See more information in the work and MS section.
- Our 'Telling people you have MS' page may be useful in helping you think about disclosing your diagnosis to other people.
- If you have critical illness or health insurance, your insurance company may approve a claim for your diagnosis.
- It is a good idea to start writing a journal about your symptoms, this helps the MS team and Neurologists understand your MS better.
Further information
https://mstrust.org.uk/about-ms/newly-diagnosed
https://www.mssociety.org.uk/care-and-support/newly-diagnosed
