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Old 10-30-2009, 09:55 PM   #1
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Jeanbean49 HB User
Question very new to the world of MS

[FONT="Georgia"][/FONt


I need to connect with others suffering MS. I am new since April 09.
having trouble with acceptance that it will strike when ever it
wants too. Help Help Please
Jeanbean49

 
Old 10-30-2009, 10:44 PM   #2
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Positivethinkin HB User
Re: very new to the world of MS

Hello Jeanbean,

I am sorry you are dealing with MS. It is so important to have the best life you possibly can. I keep reminding myself of the importance to enjoy each day. Have a happy Halloween, go treat yourself to something fun. I wish you the best.

Positivethinkin

 
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Old 10-31-2009, 06:41 AM   #3
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MSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB User
Re: very new to the world of MS

Jeanbean, Im sorry that you were so recently dx. The first year is the worst! At this time, its scary, not knowing what to expect...its almost strange how once you celebrate your first year, youll gain confidence, realizing that this disease isnt going to change your life overnight. Having a dx doesnt mean anything will change.

When I was first dx, this board literally saved my sanity! Asking questions, learning about others who had survived the dx...reading up on how things dont necessarily change in your life..it gave me the confidence that I needed. I also joined a local face to face support group and went once a month to hear speakers, learn more about MS and meet with others coping with the disease. you can contact your local chapter of the Ms society if you want face to face time- theyll set you up with someone to talk to or a group to connect with. Look for a newly diagnosed group- they will be the most help to you.

But in the meantime, maybe this will help. I was dx right after I got married..was a college student, inherited 3 stepchildren and bought my first house! WOW. not a good time in my life! Since then, I have finished school and my MBA, started my Doctorate...managed to stay married...got a great job- work 50 hours a week, cook, clean, and take care of my family...I also learned how to manage my disease...the point of me telling you this, is that You TOO can have whatever life you choose, just dont let MS get you down!

Are you taking any meds? I found that once the Rebif kicked in, I started feeling more like myself...and it gives me the feeling that Im managing my MS, not letting it manage me. I had a rough first 6 months, but since then- no relapses, no side effects- its all been good.

So, my advice is, talk to us. Tell us your fears, tell us about what you are dealing with- ask questions here, where you will get lots of feedback- and make sure you have a good doctor. Someone who will answer your questions and talk you thru your fears...sometimes, its the nurse at your doctors office who will bond with you and help you. Thats okay too. Just have someone to talk to.

life with MS isnt any different then life before MS, except for doing shots...and those shots, are our defense against being progressive! So, welcome to our world of support here on healthboards and let us know how we can help you!
Nikki
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RRMS- dx 05

 
Old 10-31-2009, 03:31 PM   #4
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Re: very new to the world of MS

Quote:
Originally Posted by Jeanbean49 View Post

I need to connect with others suffering MS. I am new since April 09.
having trouble with acceptance that it will strike when ever it
wants too. Help Help Please
Jeanbean49
Welcome to the "MS Family"

Many MSers have trouble accepting their diagnosis and I think most of us have gone through the "OH NO!" feeling. I had symptom onset at 14 years of age. I did not get diagnosed until 1982. I remember going through a bad few days of "OH NO" , but I refuse to ever go to the infamous "pity-party".

You may find that some friends will become fair-weather friends who will disappear. Others may avoid you due to their own fears. When my MS worsened in 2002, some co-workers thought I was contagious. There is really nothing you can do but treasure those friends who remain close to you.

I learned what many of my triggers were. Learning these limitations can provide a sense of self-defense. For example, I know the upper and lower temperature ranges for me. Throughout the year I make adjustments in daily activities, dress in layers to peel off and add as needed, and carry gloves or my cooling vest with me. During the summers I hibernate indoors during the hottest times of the day.

It is difficult to know if you will be "bothered" again and if so- how soon. Eventually you may determine a pattern (of sorts).

There is nothing that can keep you from having a career, a family, or whatever you aspire to do. Of course there are career problems in some fields. I had to leave the military and can never pilot a plane. BUT there are many things you can endeavor to do as long as you know what your limitations are and do not exceed them.

Often times you might feel that you are alone in this process. You are never alone. If you feel you are, get online here and vent or ask or request prayers and or support. You never need to feel alone.

I count my blessings when I am having rough days. When you literally count your blessings, you eventually find that your cup runneth over! I know that I have been richly blessed and enjoy each day of my walk. It sounds like you need some "wind beneath your wings"; as such, I will be keeping you in my prayers.
__________________
MS diagnosed since October 3, 1982
MS onset circa 1977
Proud to be MED FREE!
Eternally blessed and eternally optimistic!<><

 
Old 11-04-2009, 09:27 AM   #5
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Rainbirdclan HB User
Re: very new to the world of MS

Hi. Ive just been diagnosed with MS too, and I have the same feeling as you. Its awful isnt it. You just dont know when anything will happen. At the moment all I have is Optic Neuritis and i'm a bit "not with it" sometimes. Im due to start interferons soon. It is all rather bewildering.
Sharon xx

 
Old 11-04-2009, 09:30 AM   #6
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Rainbirdclan HB User
Re: very new to the world of MS

What a lovely reply. You sound like a really great person. It has helped me a lot your comments.
Thank you so much
Sharon x

 
Old 04-29-2010, 04:27 PM   #7
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Re: very new to the world of MS

I realize you posted this a while back and I am wondering how you are doing now? I am also a newbie and waiting for my meds to arrive. I am finding great courage in these boards and my new support system but I have to admit I am a bit freaked out because some of the questions come from those that seem to be in a more progressed state. Will that happen to all of us? Eventually will we "all get bad". If you can believe this, I saw a "backup" dr. and asked her how do your ms patients do (she was a generalist)--she said they do ok but eventually they all get bad. Now I read a few board notes about wheelchairs etc and I can't get that out of my mind. Is this one of the worse diseases one can possible ever it...unpredictable and debilitating???? Sorry I am emotional today...

 
Old 04-29-2010, 04:29 PM   #8
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Re: very new to the world of MS

Rainbirdclan, How are you doing now that several months have passed? I am going to start meds any day now.

 
Old 04-29-2010, 05:04 PM   #9
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Re: very new to the world of MS

Jodi, you may still hear from Rainbird, but you might not, I dont believe Ive seen her around since these initial posts.
You need to cut yourself some slack! And, whatever Generalist Doctor you saw, needs to be tar and feathered., No one should be giving you information like that...

First of all, less then 10% of people will ever progress beyond relasping/remitting MS. That means, that for the rest of our lives (Im one of them too) we will have good months and bad months- and if we do EVERYTHING to take care of ourselves, may have good years and bad years- and possibly never have a relapse! In the past 4 years, Ive had one bout of Optical Neuritis, a few lousy days where I wanted to stay in bed all day and didnt, 3 surgeries (female related) without any problems, and a whole host of feeling yucky days- but I didnt miss one day of work or one day of school! And, I cooked dinner every single one of those days (ok, except for a few pizza nights) for my family of 5.

Youre starting meds. I take Rebif. Did you realize that taking a med for MS reduces your chances of ever progressing? If you look at the statistics- almost every person you will meet who has progressed to another stage of MS, was diagnosed before 1990. I hate to say it, but if you are going to be dx with MS, the time is NOW. Each year that goes by, they come closer to finding another drug which helps with another symtom or prevents relapses. No, they havent found the reason why people get MS, and thus, they havent found a cure- but they are making allot of progress!

Youre scared. We were all scared. But there are over half a million people in the US with MS, and only a very minute amount are disabled! The chances of becoming disabled are very small...and you are going to do everything in your power to STOP it from happening to you. Remember that. Being disabled, in my opinion, is a heck of alot better then being told you have a terminal illness- but still, no one wishes it on anyone!

PLease think positively about this and read the posts of the people who are actually contributing to this board this month. Youll see that 99% of us are living our lives and doing just fine....you have to have the right outlook on this, or it will drive you crazy. You are not any different today, then you were a month ago before you knew WHY your body was acting like it was and it took you to the doctor! Youre still YOU!! And, we will get you thru this!
Nikki
__________________
RRMS- dx 05

 
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