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Help for Anyone Newly Diagnosed with MS

Being diagnosed with MS can be more than a bit of a shock at first. Yes, you finally know what you’ve got, what all those symptoms you’ve having mean, and you have heard what your neurologist told you.

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.

helpMultiple what? Sker … what?

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.

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:

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:

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.

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Ian Franks
Ian Franks is our Chief Columnist and Patient Specialist at Multiple Sclerosis News Today. He has enjoyed a successful career as a journalist, from reporter to editor, in the print media; during which he gained a Journalist of the Year award in his native UK. He was diagnosed with MS in 2002 but continued working until mobility problems forced him to retire early in late 2006. He now lives in the south of Spain and uses his skills to write his own flourishing specialist MS, Health & Disability blog at www.50shadesofsun.com. Besides MS, Ian is also able to write about both epilepsy and cardiovascular matters from a patient’s perspective and is a keen advocate on mobility and accessibility issues.

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