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.
Multiple 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.
- 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:
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