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Old 04-01-2010, 02:08 PM #1
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Default Seeking experiences from others...

I was diagnosed with MS about 3 1/2 years ago. I have. so far, not suffered any major issues. The problem I have is everytime something happens (and I mean anything - I stumble on the stairs, I forget something, etc.,) I slightly panic and think to myslef "this may be the start of an episode! It hasn;t been yet but it's really getting me down. My family doctor has prescribed some mind altering drugs to aid with depressive behaiour/thoughts, I have a good counsellor and most of all, I have a very supportive wife. I only know one other person with MS and not really well enough to talk to her about it so I was wondering if anyone out there had any similar (or completely different) experiences that they would be willing to share so at least I know I am not alone!!
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Old 04-01-2010, 02:48 PM #2
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I spent about the first year of so questioning everything that happened to me and everything that I felt and wondering "Is that MS or am I just getting old?" I never really had any panic about it, but I guess I have always just seen progression as something that was eventually inevitable, so I never really got too stressed out over it. Eventually you just have to move past that whole line of thinking and start living what life brings you and what you can make of it.

Somebody here or on another board told me once that I couldn't consume myself with living my disease, but that I should instead focus on living my life, and then if the disease intrudes, work to overcome it. That was the best advice about MS I have ever gotten. I am like you in that I haven't had many overt symptoms since my dx, but I also haven't gone looking for them either. I just consider myself one of the lucky ones and move on with life.
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Old 04-01-2010, 05:05 PM #3
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OH! ME! ME! ME! I know exactly what you are saying.

You MUST come to terms that most RRMS patients have some flairs but spend alot of time between them going "do I really have ms?" The big deal is that if you have a NEW or REcurring sx that lasts for 24 hour straight, then you can count that as a possible flair, and need to call your MD. Most likely its something like a dropped foot, or a sleepy arm that wont wake. as long as it doesnt last for 24 hours, it is probably just the way things are.

Anxiety is a huge issue for me. You must make friends with it,and give yourself a break.Its gonna be, what its gonna be, whether you panic or not.

LOads of folks here with good advice, you picked a good spot.
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Old 04-01-2010, 07:16 PM #4
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Welcome to NeuroTalk, Buster. I hear you and do understand.

Hang in there and hang with us.
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Old 04-01-2010, 11:07 PM #5
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Hi Buster,
Welcome! I am glad you found NT. It is a place that you can ask your questions and get answers or suggestions pretty quickly. We try to help as best we can.

I am happy to hear that you have a very supportive wife. That is so important. As to worrying what will come next on the MS road, it doesn't pay to worry about that.

You can't change the past, and the future no one knows, so we all try to make the best of it and live in the present. Enjoy each day.

I do not get anxiety about MS. You can't let it get that big a hold on you. Yes, it is a disease that 1/2 million people have, but there are so many diseases out there that are worse than MS. Some even babies get.

My first Neuro was very smart. He said to just live your life as normal as can be, you may not have another attack again for 25 years.

I listened to that advice. I had permission not to worry. So I didn't.

I have had attacks, but I never worried when the next one would happen. Why worry twice? Nice to meet you.
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Old 04-01-2010, 11:17 PM #6
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Hi Buster and welcome to NT!

You're among friends and people who understand completely what you're saying. I had so many questions and really just needed to hear from people who were in the same boat I was in. It's so reassuring to hear "I know exactly what you mean". And you'll get that here.

Having a spouse or close friend who is supportive is also a wonderful thing. I'm glad your wife is there for you.

I hope to see you around the forum more often.
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Old 04-02-2010, 05:39 AM #7
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Good replies from the others. Nowt to add from me but a Welcome.
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Old 04-02-2010, 07:30 AM #8
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welcome, i am also new to NT. I have been having systmpoms for about 4 years now and just got diagnosed in 12-09. I don't worry much about my next attack because i swear i have been having an attack for about 3 months now non stop. Or at least that is how it feels. That is awesome that you have a supportive wife. But don't always worry about your next attack just live life to the fullest and if it happens it happens, there is nothing that worrying about it will do.
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Old 04-02-2010, 08:50 AM #9
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Hi Buster! Welcome to NT!

All our paths are different on this crazy road called MS, but sometimes we have similar things going on. I haven't had an attack in about 3 years, but I do have a lot of up and down symptoms. I've gotten semi-good at knowing what makes some of them worse. Some just seem to reappear for no apparent reason (I call that my "MS grab bag". I'm RRMS, but only one symptom almost fully remitted.)

Consider doing a symptom journal. I know some stuff is weather related - extremely cold, hot, or humid conditions causes some stuff for me to go wonky. Pushing too hard, too much stress, and fevers do a number on other symptoms. Generally a flare is a new symptom or a worsening of symptoms that lasts 24 hours. Since I'm a very stubborn person and have a tendancy to push too hard sometimes, if an old symptom worsens - I wait two days to see if it improves.

Take care of yourself!
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Old 04-02-2010, 08:12 PM #10
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Many thanks everyone. It's great to almost feel normal (whatever normal is!!) knowing that other people are going through or have been through a similar state of mind. I think for me, I have never really come to terms with the original diagnosis - maybe I'm in denial or just afraid. My counsellor is really helping with that. I just keeping trying to tell myself every day that I am one of the lucky ones - another day and no major weirdness going on. The only major change in my life since the diagnosis is that I had to give up playing hockey - not a huge deal in the whole scheme of things but, as the counsellor pointed out, it was MS not me that made the decision to quit, not me. I think I am slowly (very slowly) coming to terms with things - I just want to thank everyone again for the supportive messages.
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