Another newbie.

[seattleinchicago]

Hi all,

In the grand scheme of things, I really ought to shut up and stop feeling sorry for myself. I had no idea that I had MS, even though I apparently have signs of old and new lesions on the cerebral and cervical MRIs. Without going into tons of detail, two months ago I went to the ER for something unrelated. The CT showed something abnormal, the first MRI provided more detail...the rest is history.

I started Copaxone in June and have been going through the grief whirlwind. I'm in my late 20s, super-active, very job and life-oriented...and the part of this situation that I struggle with the most is my inability to handle the uncertainty. I feel great now, but instead of focusing on that I keep getting hung up on fears about tomorrow. The what-if's get to me. (Where will I feel it first? What if it's more than I can handle? What if I have to cut back on the things I love?) I want to find a support group but haven't had a lot of luck finding other low and asymptomatic young adults, but you must be out there!

I'm totally, completely scared. No one really "gets" it, either. My parents think it's silly for me to worry about the future, but how can I not when I feel like the rug's been yanked out from under me? My husband is amazing, but I want to find other people who really understand what it's like to feel like your whole world's been flipped upside down, and you have to keep going. I am going -- really well most days, thank God -- but there are days where the fear or the anger just leave me stewing.

Ugh. Normally I'm pretty positive, so I apologize. Like I said, I really can't complain -- which is why I get mad at myself for doing just that. Thanks, though, and I'm glad to find this group!

[autotech]

It is common and perfectly ok to be scared!!

But don't play that "what-if" game!!

My attitude is stay positive, take life one day at a time, and stay active! Don't let this monster win no matter what.

When you need to rant, complain, cry or whatever there is no better place than here to do so, we are all in this together!

[KoKo]

Hello Seattleinchicago

Welcome to MS World - nice to meet you!

Autotech said it so well, I think I'll second that

It is common and perfectly ok to be scared!!

But don't play that "what-if" game!!

My attitude is stay positive, take life one day at a time, and stay active! Don't let this monster win no matter what.

When you need to rant, complain, cry or whatever there is no better place than here to do so, we are all in this together!

You were diagnosed very recently, so the emotions you're going through are understandable. Give yourself some time.

I think you will benefit from the support and interesting topics you'll find here. You don't have to feel alone with what you're going through. Sometimes we need support, and other times we give support.

Take care,
KoKo

[seattleinchicago]

Thanks, everyone! I do try to stay positive and really am most of the time -- it's just a little tough in the beginning, I think. Ah well, it's given me full license to develop my inappropriate and morbid sense of humor. Hooray for that!

[KoKo]

Seattleinchicago

Bring on the sense of humor

(no naughty words though)

Take care,
KoKo

[MrsBones]

It is perfectly normal to feel this way. It would be almost abnormal not to. No matter our age,ability or type, MS just sucks.

I think for most the what-ifs are the worst part or the diagnosis. Human beings are amazing creatures...we're capable of adapting to almost anything. We just don't know how until we're faced with having to do it.

The negative what-ifs are part of that adaptation. Nerve wracking to be sure, but they have their place. They force us to begin the adaptation process, plan better for our futures than we might have otherwise and teach us to really appreciate what we have right now,today.

However, they must be balanced with the positive what-ifs. What if you don't ever have any severe symptoms ? What if the experience brings you closer to family and friends? What if it teaches you you're stronger than you thought? What if it gives you an even greater drive to succeed? What if the new meds coming out keep you relapse free for years and years? What if they find a cure? They're all strong possibilities,too.

You have to allow yourself the time to figure this all out and wrap your brain around it. It'll come. Don't feel pressured to be positive when you just don't feel that way . You have a great day, fantastic! Enjoy it. Bad day? Crawl into bed and eat chocolate. Tomorrow will be another day and a new adventure.

[BCDubb]

Hi there.

Just like MrsBones said, the uncertainty is probably the worst part of the diagnosis. I think that is true even moreso for people diagnosed with RRMS. I was in the same situation as you in August 2008 when I was diagnosed.

Like you, I am very life and family oriented, active, social, career-minded, etc. I was thrust into a dark world when diagnosed. I couldn't get away from the thoughts of how my MS would now impact my family, friends, life and everything I have worked and strived for up to that point.

It took a lot of talking to friends and family and others I met who have MS for me to understand that life wasn't over. But most of all, I think it just took time. Time for my mind to come to terms with what I was experiencing. I have to admit, reading websites and other peoples' accounts of MS didn't help matters either, as there were some grim tales out there. But there were also plenty of positive people out there, like on these boards, who have been living with MS for a long time.

Give yourself time to deal with this. It is not easy and you will probably lose a lot of sleep worrying about the future. I sure did. I still worry about the future sometimes, but time has given me the chance to get into a better place mentally.

The other thing is to have confidence in yourself and make the commitment that you will do whatever it takes to keep yourself healthy. Meds, diet, exercise, relaxation for your mind, etc. Make the commitment to health, talk with people, and don't isolate or feel sorry for yourself.

[MomusOfThomas]

Hi,

First, I've got to say that your first year of living with a new MS diagnosis is a pretty good time to feel sorry for yourself! Be gentle with yourself. Wallow in it now if you need to, but then stop forever. Believe in your heart that you will be fine, and you WILL be fine.

I was diagnosed at 24, almost 25, and I was a long-distance runner and painter. (I was just about to get my MFA in a month.) Suddenly I could barely walk or see or hold a paintbrush in my right hand. Everyone told me that my attitude was everything, but at the same time they told me that at worst, life in a wheelchair could be fulfilling.

Fast forward to now, 14 years later when I'm looking 40 right in the eye. I'm now playing on a women's soccer league, I have a little boy who I love more than anything, a career in the arts and I feel like I have more energy than most people I know. There were some very difficult years between now and then, and there were times when it seemed to everyone (including me) thought that I was going to be permanently disabled. But don't ever believe that your body can't heal itself and reverse whatever is wrong. It can.

Decide right now that despite any exacerbations that may or may not come and linger, you are going to stay active and healthy and remain who you are.

I have 2 book recommendations: "Meditation as Medicine" by Dr. Dharma Singh Khalsa and "Peace, Love and Healing" by Dr. Bernie Siegel. I'm a huge believer in the mind-body connection, especially for the newly-diagnosed. These books were life-changing for me.

I wish you all the best and I really believe from your tone that you are going to be fine!

[jenp0323]

In the same boat

Hi all! So my name is Jen and I just found out this morning I guess I have MS. Symptoms started about a month ago, and I've had numbness, tingling, dizziness and fatigue off and on over the last month. I am feeling some of the same things... I keep going back and forth between feeling like it's not that big of a deal, that tons of people live their normal lives with MS and I'm getting upset over nothing. I am also a Type I diabetic, and so the thought of living with two life altering diseases is honestly pissing me off. I have dealt with uncertainty in my future health with the diabetes, and so I'm not thrilled to add yet another thing that could really mess with my future! So, now I'm rambling... I guess I just wanted to say I understand how you feel. I will deal with it, I have no choice, but I don't have to be happy about it right now.

[hunterd]

WELCOME TO YOU BOTH!!!!!!!!first off, always get the weight off your shoulders. this is a great place to do it!! we`ve all been there a time or two ourselves, so we understand. ask all the questions you have (even the 'embarrasing' ones). you`ll get strait, honest awnsers. good luck.

dave

[DancingPhalanges]

Hi Seattle,

You sound just like me! I too tend to not be a complainer, however given the circumstances no need for you to apologize! I too was just recently diagnosed, I'm in my early thirties, and have only had very mild symptoms. I've said it before but I'll say again, I am too busy for this bulls@*! So where that leaves me, I don't know. It's hard to not think about the what if's, I find myself just trying to go about my business as usual. I figure I'll just deal with whatever happens when it happens, but for now I'm just going to do what I've always done! Easier said than done, but I guess the more I "practice" that mind set the easier it is getting. Just know you are not alone

[seattleinchicago]

Thanks to every one of you! Your thoughts, words and suggestions have really given me some good things to chew on (and books to read). I'll be revisiting this thread many times to read it again, I think. Thanks for the warm welcome.

[LIMBO72]

Yet another newbie here. Just diagnosed last Tuesday. This forum and these people have been great. I've been lurking around her without posting much, but have learned lots. Until this past weekend, I haven't had much time to process things. As soon as I slowed down from work....it gave me time to start thinking and worrying about the future. I'm trying to stay positive and tell myself that I'm not going to let this bring me down. Guess that's all someone can really do. I will adapt if need be when the time comes, but for now, ill just listen to doctors orders and move on!