Newly diagnosed with
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I felt relieved by my diagnosis, as I had been told by many GPs that my symptoms were psychosomatic or that I was being a hypochondriac
It can be a shock to be given the news that you have MS. There is no right or wrong way to react to the news. It is very much a personal thing and everyone deals with it differently
What is happening to me?
The initial diagnosis was hard and it takes a long time to come to terms with it. Two years later it’s still on my mind but not all the time. You can come to accept it
What is MS?
When it comes to information on the condition it is important that you make sure you use a reliable source and the main MS charity groups that you can find around the world are the best source of information
It is important to know that MS is not directly inherited. There do appear to be genetic components (as well as environmental factors) to MS but this does not mean you will definitely pass the condition on.
Types of MS
- Visual symptoms
- Problems with balance
- Cognition difficulties
- Sensory problems
- Spasticity (muscle stiffness)
- Changes to mood and mental health
- Changes to mobility
- Issues with bladder and bowel function
|According to NICE guidelines a relapse can be diagnosed if ‘The person with MS has developed new symptoms or has a worsening of existing symptoms, and these symptoms have lasted for more than 24 hours in the absence of infection or any other cause after a stable period of a least one month.’|
My healthcare team
- MS nurse
- Speech and language therapist
- Counsellor or neuropsychologist
- Your GP
- A neurophysiotherapist
- Occupational therapist
The help of my MS nurse was invaluable as I tried to come to terms with the diagnosis
I feel very supported. I see the MS specialist once a year. I see the MS nurse approximately 6 months later and I also have a medicine nurse who calls every 6 months in between times
How to get the most
out of appointments
Log everything in a diary and take this to every appointment. Be very proactive – read before you go into each appointment. Don’t be afraid to ask questions. Keep calm
Questions for your MS health professional
- What can I do to help lessen my symptoms?
- What treatments are available?
- Are there any lifestyle changes I can make, such as changing my diet, which might help?
- What should I do if I have another relapse?
- How often do I need to see my neurologist/MS nurse?
- Will I require any further tests?
- I have other health conditions (if applicable). How can I best manage these conditions together?
- Are there any brochures or other printed material that I can take away with me? What websites do you recommend?
- Are there any support groups or help for people with MS in my area?
- Am I eligible for any trials/research?
Disease modifying therapies Category 1 – Moderately effective
Keep up-to-date with research so that you can discuss its relevance to yourself
Disease modifying therapies
What if I choose not to have medication?
There is a lot you can do to dramatically improve your outcomes, diet, vitamin D, exercise, stress reduction and medication. Medication is by no means the only option. You can take action and take control
- Indian head massage
It gave me a wake up to make me really appreciate my life & what I can do. I try to take the positive from it, got myself fitter than I’ve ever been which I know wouldn’t have happened if I hadn’t been diagnosed
- Lipoic Acid
- Vitamin B12
- Evening Primrose Oil
- Nicotinamide adenine dinucleotide (NAD+)
- Coenzyme Q10
Staying active and pushing myself helps me feel in control of my illness. Managing my day to day activities in accordance to how I feel that day is important. MS won’t stop me being me.
- Tai chi
Smoking and MS
I decided to live life to the full and be thankful for each day, I try to concentrate on what I can do and not let myself get down about what I can’t do
Talking to family and friends
I tried to keep it quiet and now I know that it is important to let people know
Who should I tell?
Work and employment
- Personal Independence Payment (PIP)
- Employment Support Allowance (ESA)
Personal Independence Payment (PIP)
Employment Support Allowance (ESA)
What support is there for me?
While you’ll never find someone whose disease is the exact same as yours, it’s important to talk with others with similar experiences
Counselling and talking therapies
The mental struggle can be harder than the physical and counselling was so important for me in accepting the diagnosis
You will have ups and downs, but allow yourself time to grieve if you need it. Be kind to yourself, and instead of constantly thinking of others, take some time for yourself
- Local support groups
- Direct payments
- Grants and funding
- Clinical trials
- Family carers support
- Personal assistants
- Blue badge
- Radar key
- Aids and adaptations
Further information and support from MS-UK
If you would like to talk about your diagnosis, symptoms, treatments or anything else, MS-UK can support you. MS-UK has a range of booklets called Choices where you can explore all the subjects covered in this pack at a time that is right for you. You will find these on our website at www.ms-uk.org/choicesleaflets.
Knowledge is power. Whatever your diagnosis it’s your opportunity to move on and deal positively with your new situation/life. Accept offers of help and investigate all new experiences that could potentially help you
Try to think it’s not the end of the world and there is so much support & amazing new, hopeful medications coming out all the time
MS therapy centres
MS therapy centres are located across the UK, and offer a range of facilities to support people affected by MS, from massage therapy through to counselling services. You can find a map of centres across the British Isles on their website.
The MS Trust is a UK charity who provide trusted information to help people with MS live the best life possible, train and educate MS health professionals to offer the best care and fund MS nurses in areas of greatest need.
Enquiry service 0800 032 3839
Shift.ms is a social network for people with multiple sclerosis. Hosted online and aiming to reduce isolation and create peer support. The charity supports many thousands of recently diagnosed people across the world as they make sense of MS. It’s independent and it’s free.
The MS Society is the largest MS charity in the UK. They have a number of local groups across the UK. They fund a range of projects to understand MS and help improve diagnosis, treatments and services. They also undertake campaigning and they invest heavily in research.
Helpline 0808 800 8000
MS-UK is here for anyone affected by multiple sclerosis, to empower them to live healthier and happier lives by improving the understanding of MS and providing support where it is needed most.
Call the MS-UK Helpline 0800 783 0518
For more information on all of the above please see the following links. If you would like to discuss anything mentioned in this booklet then please call our helpline on 0800 783 0518. If you would like a plain text version of this booklet please email email@example.com
Similar Choices booklets
- WebMD. What is Clinically Isolated Syndrome? Reviewed by C Melinosky, 14 Nov 2019. Accessed June 2020 www.webmd.com/multiple-sclerosis/clinically-isolated-syndrome
- National Institute for Health and Care Excellence (NICE). Multiple sclerosis in adults: management. [CG186] Last updated 11 November 2019. Accessed June 2020. www.nice.org.uk/guidance/cg186/chapter/Introduction
- Practical Neurology. Volume 15, Issue 4. Association of British Neurologists: revised (2015) guidelines for prescribing disease-modifying treatments in multiple sclerosis. Scolding N, Barnes D, Cader S, et al. Published June 2015. Accessed July 2020 https://pn.bmj.com/content/15/4/273
- MS Trust. MS Decisions aid. Accessed July 2020. www.mstrust.org.uk/about-ms/ms-treatments/ms-decisions-aid
- Multiple Sclerosis National Therapy Centres. Other treatments and services. Complementary/holistic therapies. Accessed July 2020. www.msntc.org.uk/ms-therapies/other-treaments
- National Library of Medicine (NIH). Diet Quality Is Associated With Disability and Symptom Severity in Multiple Sclerosis. K Fitzgerald, T Tyry, A Salter et al. Published Dec 2017. Accessed July 2020. https://pubmed.ncbi.nlm.nih.gov/29212827
- National Center for Biotechnology Information (NCBI). Vitamin D and Multiple Sclerosis: A Comprehensive Review. M Sintzel, M Rametta and A Reder. Published 14 Dec 2017. Accessed July 2020. www.ncbi.nlm.nih.gov/pmc/articles/PMC5990512
- Overcoming Multiple Sclerosis. MS & Vitamin D Deficiency. Accessed July 2020 https://overcomingms.org/recovery-program/sunlight-vitamin-d
- BMC Neurology. The impact of physical exercise on the fatigue symptoms in patients with multiple sclerosis: a systematic review and meta-analysis. Razazian, N., Kazeminia, M., Moayedi, H. et al. Published 13 March 2020. Accessed July 2020. https://bmcneurol.biomedcentral.com/articles/10.1186/s12883-020-01654-y
- Journal of Neurology, Neurosurgery & Psychiatry. Vol 87, Issue 2. Cardiovascular risk factors are associated with increased lesion burden and brain atrophy in multiple sclerosis. Kappus N, Weinstock-Guttman B, Hagemeier J, et al. Published Feb 2015. Accessed July 2020. https://jnnp.bmj.com/content/87/2/181
- Gov.uk. Check if a health condition affects your driving. Accessed July 2020. www.gov.uk/health-conditions-and-driving
- Citizens advice. Check if you’re disabled under the Equality Act. Reviewed January 2019. Accessed July 2020. www.citizensadvice.org.uk/housing/discrimination-in-housing/checking-if-its-discrimination/check-if-youre-disabled-under-the-equality-act
- Gov.uk. Get support in work if you have a disability or health condition (Access to Work). Updated 12 May 2020. Accessed July 2020.www.gov.uk/government/publications/access-to-work-factsheet/access-to-work-factsheet-for-customers#overview