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  • justdiagnosed
    Hi folks basically I’ve been diagnosed with ms and am still in hospital I got two weeks of physcio left then it’s back out to the reall world Amm im fairly scared and sorta feel like I’m going out of my mind here basically a chat with people who went through the same at a fairly young age would be helpful I’m 31 and a guy
  • MS_Navigators
    Hi there.  I'm really glad you found MSConnection.org and hope you find someone here who has been through a similar experience.  The Society has a few other ways to connect that I wanted to share with you, too:

    One-on-One Peer Connections (by phone & email)
    Search for and connect with a peer support volunteer who has “been there” and can provide you with helpful tips, suggestions and emotional support via phone or email. 
    Connect with a Peer Support Volunteer One-on-One : National MS Society
     
    MS World
    Whether you are newly diagnosed or well experienced with MS, you are welcome to share your questions, experiences, successes and challenges on our website, message boards and chat room. Family members and friends are also welcome and highly valued at MS World.
    Welcome : MS World
     
    Patients Like Me
    Online patient network and real-time research platform for people affected by a variety of medical conditions, including MS.  Through the network, patients connect with others ‘just like them’ who have the same disease or condition and track and share their own experiences.  Search from more than 500,000 members, with more than 55,000 of which report having MS. Search the MS Community by patient age, gender, treatments, symptoms, and MS disease course (ex. primary-progressive). Membership and usage of the site are free to all participants.
    Multiple Sclerosis Community : Patients Like Me

    MS Friends
    There is also a peer support hotline that is available 9am to midnight ET, 7 days a week and is answered by volunteers with MS.  If you would like to connect with someone by phone, the MSFriends hotline may be reached at 1-866-673-7436:
    MSFriends - Peer Telephone Support : National MS Society
     
    Please also feel free to call the Society at 800-344-4867 and speak with an MS Navigator if you have questions about MS or need help finding community resources.  

     
  • shiloh
    Just remember that you are not alone. We are all going through various things with this disease. Things will improve when you get on a medication to help you. I wasn't diagnosed until I was 61 but have been living with it since my 30's too. Yes...it's a nightmare right now, but remember that nightmares only occur when your sleeping and you will wake up!!!
  • april9517

    I was diagnosed in March 2017 at 21 two weeks before my bday, but living with it since I was 9 most likely. I went to a drs appointment that turned into an ER visit and then a 4 day hospital stay, following that was 2 more ER visits in two weeks due to effects from the Solumedrol steroids I was put on. The first few months seem like a total blur. I was in and out of work, stubborn to take time off, but not strong enough to work either. It didn't hit me until a few weeks after dx, when I was actually alone for the first time. I still have my bad days- have been on three different drug already, but almost  a year later now, you find ways to move on and get the bad thoughts out of your head. I would say, it is important to let yourself feel those emotions cause I bottles it up and then one day I lost it. It's going to be a struggle but it's up to you to make the best of your life, even with all the obstacles we have all been thrown.

    Good Luck, it will get better.

  • justdiagnosed
    Feckin hell 21 is young I’ve no idea how long I had this for I presented at ae with lose of power in my legs got a mri I was in a neuro ward for two weeks got a week of steroids then moved to a orthopedic hospital for rehab got the second tysaberi infusion next week and then I’m out of here I’ll be facing life again and that feels very abstract and I feel like a very different person
  • justdiagnosed
    Hi thanks for replying they started me on tysaberi basically I stopped being able to walk over thexmas period while visiting family but with steroids in the hospital i got that back to walking you can’t tell I have it now just got more physcio to work on he balance when my eyes are closed I’m still in shock with things litterally everything’s changed now it’s odd but I’m actually worried about the opposite sex who on earth is going to want to settle down with someone who’s staring down the barrel of needing a carer in a few years which fingers crossed doesn’t happen but it could the future feels so subjective now 
  • april9517
    That is definitely the scariest part, the unknown. knowing you could live the rest of your life just fine or wake up one day not being able to feed yourself. The list of things that MS affects is endless. sometimes you just have to remind yourself that life, even without this disease, is unknown. You could wake up tomorrow and get hit by a car, morbid I know, but it's the truth. It doesnt do well to ponder on what could happen. It makes it very hard to plan for the future, yes, I never know what i will feel like when I wake up, but you just have to try to take it one day at a time. 
  • anywhereoutofthisworld
    I was diagnosed with Multiple sclerosis in late July of 2017 after a brain MRI came back showing lots of MS lesions and a spinal tap came back positive for high amounts of elevated protein 'o' bands. Due to the amount of lesions & 'o' bands, my neurologist believes I'd actually had MS for quite some time. I will admit that MS is not easy but I always believe in the old adage, what does't kill me will make me stronger. At first I realize you're not gonna feel this way. Luckily this site is full of supportive and knowledgeable members and can help you pull through this. Unfortunely MS has no cure but their are some great medicines out there to help slow its progression. I myself take a pill called Tecfidera twice a day. I had a few side effects in the beginning but they go away, at least in my case they have. For more information on medication options for MS, Click Here. I imagine that you're scared, and perhaps you feel alone but I can promise you, you are not, we are all here for you. Feel free to connect with me and send me a message if you have any questions or just wanna chat.
     The world breaks everyone, and afterward, some are strong at the broken places. - Ernest Hemingway
  • justdiagnosed
    Thanks sure I’ll have to take each day as it comes and embrace the it’ll be grand button it’s some shock though and new I’m out in like 10 days then the reall feckin hell this is life now will begin looking foward to some of the tightness and feeling numb to go away though I must admit the remission part sounds like a holiday right now 
  • gabrielle519
    Hi,

    I was diagnosed at a young age like 19-20 I think. Honestly I kinda blocked those years out because it was rough for me at first. It took a while for me to find the right doctor and get to the right place. I had years of seeing a psychologist not only getting physically good but emotionally good as well. I started on tysabri (the drug saved my life). I now work full time and life is good. Please remember you are not alone. Good luck!
  • justdiagnosed
    Wow that’s so young can I ask did you go into remission at all and then start to have a quality of life or did you just deal with the being numb in a lot of places and work around it 
  • gabrielle519
    I am in remission which means I have no worsening or newer symptoms. Although certain things can throw my symptoms off like getting sick, heat, or stress. When I was bad I couldn't walk without falling over, my balance was so off, I had numbness in my right hand and couldn't write. I walk now sometimes its with a limp. The balance is a little better. The numbness is gone. There was some permanent damage to my spinal cord. My hands remain tingling at least I think but it becomes so normal that you can't really tell as much. I take medications for the fatigue,  stiffeness, and muscle spasms. I also feel much better now that I'm eating healthy. Exercise is really good for people with MS as long as you know your limits.

    I will not tell you everyday is easy. I have good days and bad days. I fall a lot but I get right back up. I don't let this disease stop me from living and being happy.

    I learned a lot from this experience. I would say that at one point I wanted to die I actually prayed every night that I wouldn't wake up in the morning. Now I have realized how much I would have missed. (The adoption of my nephew, forgiveness of my parents, brothers wedding, and happiness)
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