Well, you may have heard, but you didn’t take it in because you weren’t actually listening. The doctor was droning on while you were lost in your own thoughts, your own despair.
You leave the consulting room not knowing much at all, but grasping an information sheet to read at home.
So, once you get the name of the disease sorted out, where can you find more information? Fortunately, most countries have MS charities, or nonprofits, that publish a host of leaflets and pamphlets that can help. As an example, I looked at what is on offer to the newly diagnosed in the U.S.and U.K.
Each country has the luxury of two charities.
Newly Diagnosed with MS in the US
The National Multiple Sclerosis Society (NMSS) offers:
- Knowledge Is Power (KIP): An educational series for people newly diagnosed with MS or those with a loved one recently diagnosed.
- Understanding treatment options: Strategies available to modify the disease course, treat relapses, manage symptoms, and improve function and quality of life.
- Deciding to disclose … or not: Telling others about your MS may be the first thing you want to do — or the last.
- Protecting your employment options: Read about the ways MS can affect employment, and learn some strategies for maintaining your place in the workforce.
The Multiple Sclerosis Association of America (MSAA) also provides a “Multiple Sclerosis information” (MSi) collection, offering online educational videos, webcasts and webinars. These are easy to access through the MSAA’s website by selecting the topics of interest to you. For individuals who are newly diagnosed, or who are experiencing initial symptoms and have yet to be diagnosed, a portion of these MSi videos and webinars may be particularly helpful. These include:
- An Introduction to Multiple Sclerosis
- The Treatment and Management of MS Exacerbations
- MS on the Fast Track: The 411
- How to S.E.A.R.C.H.™ for the Right MS Therapy For You
- A Closer Look at Clinically Isolated Syndrome
Newly diagnosed with MS in the UK
On the other side of the Atlantic, the MS Society (MSS) has published the booklet, “Just Diagnosed – an Introduction to MS,” available in English and a number of other languages.
The information is for anyone who either has just been, or is in the process of being, diagnosed with MS.
The MSS website says: “You also could be the partner, relative or friend of someone who’s received this diagnosis. You may be experiencing a huge range of emotions, among them anger, shock, fear or even relief (especially if it has taken some time to be diagnosed).
“It’s likely that you also have hundreds of questions, many of which you don’t know who — or how — to ask. While we can’t promise that we can provide all the answers here, this booklet aims to give you an introduction to MS and to provide the means for you to seek the information and support you need.”
The booklet is also available in audio format.
Alongside the society, the MS Trust (MST) says it can provide as much information as is needed, either at diagnosis or later. It says: “You may feel emotional and probably have lots of questions. The MS Trust can help you.”
The MST also has other information if you’re concerned that your symptoms might be MS, or have been diagnosed with clinically isolated syndrome (CIS).
Here is a list of available information from the MST:
- What is multiple sclerosis?
- Why did I get MS?
- Are there different types of MS?
- About MS
- Relapsing remitting MS
- Primary progressive MS
- Secondary progressive MS
- How do people respond to MS diagnosis?
- How much will MS affect my life?
- Are there changes I can make?
- Living well with MS
- MS and your feelings
- MS and life choices
So, if you are newly diagnosed with multiple sclerosis, or are caring for someone who is, remember you are not alone. Fear of the unknown can be terrible, but there is plenty of information prepared especially for you.
This article, written by me, first appeared on Multiple Sclerosis News Today.