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    Old 01-18-2015, 09:29 PM   #1
    jaymacky
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    recently diagnosed and nervous

    I am a 23 year old newly graduated nurse who was diagnosed with RRMS after my MRI came back with approximately 40 brain lesion's and 1 spinal lesion. I am currently lucky enough to not be experiencing many symptoms at this moment but after reading some forums I am losing hope about having a full life just simply because of the amount of lesions. Does anyone have some tips or maybe some positive, kind words?
    Thanks.

     
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    Old 01-18-2015, 10:02 PM   #2
    MSJayhawk
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    Re: recently diagnosed and nervous

    Quote:
    Originally Posted by jaymacky View Post
    I am a 23 year old newly graduated nurse who was diagnosed with RRMS after my MRI came back with approximately 40 brain lesion's and 1 spinal lesion. I am currently lucky enough to not be experiencing many symptoms at this moment but after reading some forums I am losing hope about having a full life just simply because of the amount of lesions. Does anyone have some tips or maybe some positive, kind words?
    Thanks.
    Welcome!

    I have so many lesions that my MRI can only count the lesions which are active.

    It is not a matter of the number of lesions you might have, but rather , the location of lesions and how they affect you. The lesions you have in your brain may do little to affect you. The neural pathways will often "re-wire", especially early in MS. You could have a long 30 - 40 year working career with few problems.

    MS, while chronic, is not fatal. In your budding career, you can still go far. I had MS develop at 14 yo and was finally diagnosed when I was 19 yo. I was able to enjoy 20+ years of work before I had to take disability. While you apparently have RRMS, mine has been progressive. I do not have respites, but I still enjoyed my career.

    While MS varies in how it can affect each MSer, there is nothing foreseeable for you to worry over.

    As you begin your MS journey, you probably should know that you have had MS for some time; therefore, you should not have to worry too much! Also, know that life with MS is best maintained with moderation. For me, this works. I move and stretch. After 38+ years, I am doing really well as that is my MS Specialist's assessment of me. I would encourage you to establish a new definition of "normal" for yourself. This can serve as a benchmark against which you can judge your own MS. Also a symptom journal can also help. For me, because my MS is a daily battle, I have much more to record.

    I have found that I have triggers which are either avoidable or unavoidable. I also have signals my body gives me. My avoidable triggers allow me to avoid potential problems. My unavoidable triggers are fairly seasonal or on a calendar schedule. These I handle by clearing my schedule.

    As you make your journey, you should know that you are not alone. Your good days should far outnumber your bad. I redefined my "normal" benchmark and redefine it as needed. As such, I can say that over my nearly 4 decades, I am not going anywhere soon and my good days still outnumber my bad.

    If you have questions and concerns or just need to rant and rave, you have come to the right place.
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    Old 01-19-2015, 03:31 AM   #3
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    Re: recently diagnosed and nervous

    Hi Jaymacky,
    im sorry you were recently dx and that you are going through this. BUT yes, I have some positive words and a positive story for you!

    I was dx almost 10 years ago. When I was dx, I had over 50 lesions- all of my brain and brainstem. I was getting my first bachelor degree, raising 3 kids and was completely overwhelmed. Back then, I didnt have a clue what MS was or what it meant. I was actually terrified. I was in my 30s.

    I started to learn everything there was to learn about the disease- decided to trust my neurologist, who is "the guy to see" in my area when you have MS. And against my families wishes, stayed in school and continued working.

    I managed to get not only a double B.S. degree, but continue on to get my MBA (all with honors). I also changed jobs, started my first management position and learned how to best take care of myself and my disease. I learned about my triggers, heat, not getting enough sleep, staying hydrated and learning how to eliminate big stress. ( I started working out 3-4 times a week which really helps).

    Fast forward 9 years. Im now management in my company. I am writing my dissertation for my post graduate degree. I now have over 100 lesions and have tried 7 different DMDs, none of which I can tolerate for more than a few months before I build up antibodies to them- Im also teaching college level courses online. My job has me traveling both nationally and internatioinally and I spend at least 10 days a month far away from my family and support system. I dont have any symptoms 90% of the time and the ones which do show up are old symptoms usually triggered by me not taking care of myself, or not getting enough sleep. I aim for 8 hours a night.
    I am not disabled in any way- I manage my disease by myself, no one at my job even knows about it- and when things are going badly, I fake it!

    MS doesnt have to come between you and your career; nor does it have to change your "wants" for your future. You dont have to disclose it to anyone and you dont have to have people looking over your shoulder waiting for something to happen to you. Its really mind over matter. You work with it and you take care of yourself and do the very best you can. People will see what you want them to see. Nothing more. I do advise against disclosing to anyone whom it is not critically important to tell. Having done that in my past, I can tell you that it wasnt a good experience for me. People were always watching over my shoulder to see what would happen next. If you dont give them any ammunition, they cant do that. I also truly advocate that you find a doctor you can trust to manage your disease for you. Look for someone who is either an MS specialist, or someone who treats 50 MS patients a week- any other neurologist isnt going to be savvy enough to know how to be on your side or help you through this process. The first year is actually the hardest. Once you get through it, youll find that you get a much better handle on both what you can and cant attempt, but also what is normal for your disease.

    i wish you only the best, Congratulations on finishing your degree! And come back here often with questions and for support. We have all been where you are...

    MSNik
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    Old 01-19-2015, 07:08 AM   #4
    mindi111
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    Re: recently diagnosed and nervous

    I will reiterate what Jayhawk and Niki said in that number of lesions is less important than where they are located. You have forty lesions and feel well, so that's proof that number isn't that important!

    I have many brain lesions but the only seemingly sumptomatoc ones are two that are at T12-L1 on my spine. Little buggers they are. They took my gait and my bladder control. Of course the brain ones may become symtomatic but for now they're ok.

    Sorry that you have this Dx though. I remember when I got my Dx and how upset I was. Allow yourself to be upset and feel what you need to feel. We are resilient creatures though and you will be ok. Is your neuro talking to you about disease modifiers?

     
    Old 01-21-2015, 03:52 AM   #5
    Gullyabb
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    Re: recently diagnosed and nervous

    Hi Jaymacky,

    I don't have a diagnosis of MS, but have been living in some type of limbo for 4 years.

    I can tell you that the human body and spirit is incredibly adaptable. You will find ways to cope, manage and overcome. You have every right to be upset about your diagnosis but it is not a death sentence, nor is it a guarantee of ending up in a wheelchair.

    Since getting 'sick', I've changed jobs within my profession and am very happy and productive. I've figured out some of my triggers and try to manage them. One day off when I've overdone it can save me from missing 3 days when I 'crash'.

    I've noticed that the reactions of those around me make a big difference. I avoid the 'simperers' like the plague now. I don't hide that I have medical issues, but I'm lucky enough to have great job security and benefits, so there's no need to talk about it or not.

    I would also like to tell you that since all of this started for me, I've learned compassion, worked hard on my attitude, gratitude, and have accepted that I can't control everything (although I still try )

    For the first year, I wanted someone to 'fix' me so I could get back to 'normal'.
    This is my normal now, and it ain't so bad. My mother tells her friends that I'm deathly ill and it's a matter of time before I'm drooling in a bib, but that's her problem, not mine. She thinks that I would be better off 'resting' all the time and not doing anything.

    Anyhoo, you've found a great place here and you will find your way through this journey.

    Put one foot in front of the other. Repeat.

     
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