I find the toughest thing to grasp is the incredibly wide variance of symptoms and intensity from one person to the next. I'm fairly mild and compared to most people on this site, I have it 'easy.' I feel it, I know my patterns and limitations, but MS is a difficult thing to categorize and generalize on.

The other thing that's concerning--to all, I'm sure--is the unpredictability of it and whether or not it will plateau or just get worse and worse, and how fast. Those are questions it seems everyone has: "What happens next? What can I expect? How long? When?"

When I was diagnosed, I only had one lesion, and it was in my spine. My initial symptoms went away right after steroids. My doctor told me that I might not even have MS, it could even just stay at one lesion. I didn't take it seriously, and was in major denial. I wish I had been more serious and proactive. However, I don't think I was ready to talk to those that have had MS for years, I think I would have had major anxiety about what was to come. Now that I have slowly had more lesions and more serious symptoms, I have educated myself. So, I would say that newly diagnosed should be informed and educated on MS, but from the right (legitimate) resources. NOT googling. Providing the correct forums or websites is key. Otherwise you can go down a deep, dark hole.

@A MyMSTeam Member -- As I understand it there are 4 main types of Multiple Sclerosis -- and this is how I would explain it ...

1. Relapse-Remitting which is when you have periodic relapses (activity - flare-ups) which often result in some loss of function (mental or physical) but you have periods of recovery in between your attacks. Sometimes you can recover much of your functionality. You can have mild or more severe symptoms. This is the most common kind of MS (about 90% of us have this form) (Like a ball rolling down a hill, it stops at a plateau for a bit, but eventually, it moves on and rolls down to the next level.... Sometimes it's a fast roll, sometimes it's a slow roll.)

2. Primary Progressive - This is a slow and steady decline in functionality from the start of your first flare-up (Like a ball that just keeps rolling down the sloped hill not really stopping.)

3. Secondary Progressive - This is like primary progressive, except you get some periods of recovery in between your flareups but you don't get any better. (The ball rolls but hits a few bumps slowing it a bit, but not for long, it will keep going because the hill is steep.)

4. Progressive Relapsing -- You get worse but you also get really obvious flare ups and you don't get any recovery. (The ball rolls, hits some rocks, bounces, and rolls faster, hits more, rolls faster, down, down....)

Hope that helps....

Mentioned Users

A MyMSTea...

I think that it is almost harder for loved ones to understand. We know, bucause we physically feel the effects. They can only look on, help where they can, and do their best to understand. I would recommend to any new person to have family counseling to help deal with the realities of MS. It is hard on everyone, not just us. Also, utilize the MS Society resouces as much as possible.

Denial of any condition is not a healthy coping mechanism, gaining education and strategies to address changes in health are proper tools. Surrounding yourself with "supportive" friends and family are crucial. Most importantly, never stop loving yourself. How can you love others if you don't love you?