How did your expectations of what MS would be like when you were first diagnosed compare to reality?

Much worse when problems occurred, but problems occurred less than expected. If this makes sense.

My knowledge of MS and how it can affect someone was rather limited when I was first diagnosed. I believed that all MS patients were in wheelchairs within a short period of time. Since diagnosis, I've done a lot of reading on MS and of course much more is known now about the disease than was known when I was diagnosed over 15 years ago. My specific case is not as dire as I originally believed it would be. I know there are others with MS who are far worse off than I am just because of the nature of the beast and how it can progress. Then there's the amazing ability that we all have to "adapt" as things change. We find ourselves saying "Hey, it's not so bad that I can't handle it. I can deal with it, modify my behaviors, adjust my lifestyle, or just plain cope". Perhaps that coping mechanism is part of my saying it's not as bad as I first thought it would be.

....I avoid negativity as much as I'm able to. I live by the motto "In the face of uncertainty, why not HOPE?" Negative people, comments, etc. can and do take a person's hope away. I was diagnosed 8 years ago and I'm doing well. I do realize my life would be easier (and far less expensive) without MS, yet I look around and see people who are SO much worse-off. Multiple Sclerosis is about what I expected....and I CAN do this!

As I clicked submit after choosing the option stating my MS was not as bad as I expected, I reflected on what exactly that means. This choice holds true only in the physical realm. I tend to think there are 4 realms to my well being - Physical, Intellectual, Emotional, and Spritual (PIES). Upon my diagnosis 12 years ago, my fears mostly centered around my future physical capabilities. While I may still end up in a wheel chair - my worst fear - it is in the other realms that I have truely been affected by this illness. Intellectually, I get frustrated when my mind gets befuddled by fatigue and I do not feel as capable as I used to feel. Emotionally I feel the depression that strikes so many with MS, a depression that is not about being ill nor even about anything specific. A malaise sets over me though that can be overwhelming and debilitating. The Spiritual realm has actually surprised me - whereas pre-MS (hey you men out there with MS, you too have a time of PMS!) I did not have a strong relationship with a higher power, I feel blessed now and trust that I am being taken care of, that there is a plan. That I am not in this alone.

Voting, then, from all of these realms, I would say that Physically actual MS is not as bad as expected, Intellectually and Emotionally it is worse than I expected, and Spiritually my life is better than it was before.

Deborah Richards

I was diagnosed with Relapsing and Remitting MS in December 2006 at the age of 55. In retrospect, I have suffered with various symptoms for at least 20 years. I had been told repeatedly by various physicians to "see a neurologist", however, as a wife, mother and business professional I kept putting it off or when the symptoms would remit, I'd think I was fine. As a neurologist told me recently, "You've been in serious denial." When I ultimately lost vision due to Optic Neuritis, I could deny no longer. The MRI showed those undeniable lesions, with the diagnosis of MS.

Still in denial even after the diagnosis, after regaining my vision I attempted to go back to my "normal" life. I thought if I just worked harder, I'd be fine. This spring I had an epiphany! Feeling my health spiraling downward again, I knew I needed to take control of my life! I quit my fast paced, and extremely stressful sales job, and am completely focused on healing myself through nutrition and exercise. Today, I feel better than I have in 20 years! And I am improving daily, (people keep telling me how awesome I look and question the MS diagnosis from my appearance) I still have symptoms of the MS however, they are not as troublesome as they had been.

I don't know if this is the answer for the rest of my life however, the one thing I've learned from MS is that I'm taking it "one day at a time". I feel wonderful today and for that, I am grateful.

One last comment.....I am taking NO medications. NONE!

When I was first diagnosed with MS, I was told that I probably wouldn't get any worse than I was physically at the time. I was very fit; working as an ER nurse, doing aerobic classes, raising a toddler, maintaining my house. Thirty years later, I am using a cane, barely maintaining my household, not able to exercise, and retired and on disability 4 years before I expected or wanted to leave nursing. So physically it's much worse than I expected. However, cognitively and emotionally I am much the same. I have not been plagued with decreased cognition or depression for which I am truly grateful. Frankly, though I didn't know that those areas might be affected so I had no expectations there. Judging from the comments I've read, MS continues to be a baffling and confusing disease. No two of us are the same and it will be an uphill battle to find a COMMON cause. I frankly don't believe there is one. I think there are a multitude of causes that cause auto- immunity. My daughter and I share auto-immune diseases, however she has Crohn's and I have MS. Explain that.

Wow - I encourage voters to keep leaving comments like these. This is one of the better threads we've had going here at MSNews. I think these comments are really capturing the essence of what it can be like to have MS.

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Art Mellor, Accelerated Cure Project for MS, art-msnews -at- acceleratedcure.com

I was scared as hell on the day that I was diagnosed and sent home with a box of Avonex information and little else. The people in the book were in wheelchairs and I had no idea what to expect. That was 4 years ago, and my outlook on the physical aspects of the disease are much better-I have weakness, numbness and fatigue, but can walk and was able to have a baby who is everything I could ever have wanted. The emotional reality is a bit harder for sure. I was in a great place in my life as far as work, my relationship and of course, my health before the diagnosis. I was your happy, non-complaining average Joe working towards my CPA and planning marriage and family life. MS basically sucks and there are days when I watch people walking or jogging and wish that could be me...I hate being numb and uncomfortable all the time, and tired-it's hard to explain fatigue to those without the disease. I would not have understood it. And who wants to be tired at 37? Even as I write this, I feel the familiar pang of guilt because there are so many people worse off than me AND because it seems like everyone else I read about is able to maintain such a positive attitude. Most days, I am a happy and lucky person with a great life, but I'd be lying if I said I didn't miss life before MS...

For me, MS has been much worse than I exepected when I was diaganosed. I was diagnosed almost two years ago and was led to believe, based on information from my nerologist and on the web, that as long as I used my medicine I might have issues 10 year down the road but should be able to lead a relatively nornal life until then.

The reality is that I am a very tired working mother of three teens who has had to make a major reduction in job responsibilty just to manage. I have cut way back on what I used to do and still do not feel great (although I look fine as everyone tells me). I know things could be a lot worse and so I try to not complain but you asked....

MsBLUE24x7MS - 6/15/07 I was diagnosed with relapsing/remitting MS, put on Betaseron, started physical/occupational therapy, and Signed divorce papers 10/30/07 to be an Ms.
I'm not much of a complainer, and I know with MS that I will have ups & downs. Crying and getting Depressed won't help me either! But I will take my Celexa daily just in case and follow the *Swank* diet/pill suggestion!! ;o) So all I can do is read Anything & Everything I can get my hands on, talk to others, share what I know and learn what I don't. They say I've probably had MS for 2yrs. No wonder what was going on!!! ;o) lol I was getting slightly worried when they kept shining light in my eyes asking about my sight, but not telling me why and I didn't know I should have asked why! I've always Hated needles - but if it makes life better, then I will give myself that shot every other day!!! I want to continue living life the way I have been so far and I'm ready to make adjustments as needed :o) I found this list of people I recognize and admire: Montel Williams - talk show host and actor, Clay Walker - Country and western singer, Richard Pryor - comedian and actor, David Lander "Squiggy" - actor in the American TV show "Laverne & Shirley", Teri Garr - Actress (Young Frankenstein, Tootsie, Close Encounters and others), and Annette Funicello - singer, dancer, former Mousketeer. Sir Augustus Frederic D'Este (1794-1848) - grandson of King George III of England = 1st documented case of MS
Keep S'myelin

Actually, I had no idea of what to expect because I had no understanding of the disease. It was one of those dreadful diseases identified by its initials, such as muscular dystrophy (MD), which "other people" got, I'm ashamed to say.