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  • MSCathy
    Just looking for someone else who actually understands! Having a hard time dealing with this. I was diagnosed October 1, 2012 so yes I am very new to all this.
  • 12trikaj
    Just looking for someone else who actually understands! Having a hard time dealing with this. I was diagnosed October 1, 2012 so yes I am very new to all this.
    I feel exactly the same way you do, just like I need a friend to talk to because like I have said before, you can have great people in your life but if they don't have this horrible disease, they really don't understand what you are going through.. I was also just diagnosed this November and I can not seem to get it out of my head no matter what I do..Feel free to e-mail me as much as you would like, and I will personally check it daily just for you..I wish I had a friend that got it....My sister was diagnosed back in 97 but not only do we not talk much, we are at different places with the diagnosis if you know what I mean, and I know you do :) I am married and have 2 boys 19 and 24, but they are busy with their jobs and girls :)  I would love to have someone to talk to and I am also a great listener, I hope to hear from You :) trikaj12@gmail.com
  • THERESAF
    Whee is everyone?
    I'm in VA and have 3 adult chilren>who all are out on their own.
    My husband is very supportive but is not physical with me.
    That makes me sad!
    Need a friend!!!

    Theresa

  • THERESAF
    Hi! I have had MS since 1993 and now am wheelchair bound but don't have any pain.
     However, my husband doesn't undestand why I feel sorry for myself...
    Theresa
  • THERESAF
    Hi, I'm Theresa in VA with SPMS.
    I'm confused what I should do now..
     
  • CowboysnAngels
    Welcome MSCathy, like you I was diagnosed October 22nd, and I don't like the new me either, mainly how tired I get.  My main complaint is my legs, they start feeling heavy and don't want to work if I go too far or overdo it.  Otherwise you can't tell.  Still working full time and not on any of the meds except Horizant for my legs.  The hardest thing I did was to go and get a rollator (walker with wheels and seat) last week.  I didn't want to be seen with it.  I finally sucked it up Saturday and went to the mall with my mom (90) and she is on one also so we went shopping.  I was glad to have it so I could sit down when I needed to.  My husband is wonderful with and for me.  I'm trying hard to count my blessings and not my disasters!  Hope to hear from you often.   :)
  • medoit12068
    I was diagnosed 6years ago. I have been on copaxon for 2 years an then took a reaction. Had to stop. That was doing so good for me. Now i am trying all different kinds of meds all of which i had a reaction to. I am tired of being tired. I just gave in and got a electric chair. I am tired of not being able to get out. I take a lot of meds and tired of that to
  • justinyoung
    Dear friend,

    I was diagnosed with MS the week of September 11, 2001. As I read you letter, I have to hold back tears, I have times feel as though no one understands me and that includes my wife. I know she does and tries harder, but the falls, the pain and mental agony I think will be too much for her. I need a friend as well who understands so if you feel comfortable please reply or send me a call2012901010.

    Sincerely,
    Justin
  • andie6582
    Hello, I found out I had M.S. in  November 2001,  I have had to deal with a lot of emotions.  major, major depression, my doctor for that has finally found out the meds that work for me dealing with that, a lot of them just did nothing.  Lets see, my 1st M.S. medicine was Rebiff, wow, talk about depression,  it got so bad I stopped the injections, they  majorly HURT, just for a second, but it felt like forever.  So anyway I got back to the doc and she put me on Tysabri (I think thats how you spell it) and so far no problems and I have been on that for a long time now, I just sit in an I.V. room for about 2 hours, now that sucks but it doesn't hurt any and it doesnt make me more depressed.  I feel very lucky, my husband takes good care of me he goes to the doc and the i.v. room with me, and he understands (as much as he can) about me being so very tired.  I had a hard time at 1st too, I thought I was to young and what did I do to deserve this, but it did explain a lot of how I was doing or acting until I found out.   Now, I chuckle to myself because some times I forget I have it.  It does get better.
  • THERESAF
    You showed that MS stinks, but doesn't control you!
    I have used most of the ABCR drugs and am taking tysabri too.
    I
  • THERESAF
    Andie,
    I've had MS since 1993 and refused to accept it more than quitting my job as a nurse and moving to my in-laws for support (from MO to VA).
    I started taking Betaseron for 4 years, then Avonex which I liked since it's just once a week; then Tysabri was suggested!
    So, I consider myself the "all-knower"
    LOL

    THERESA
  • THERESAF
    Andie, I thought I was being punished too! Now, I've had weaking of my legs - but no  pain!
    What is going on?
  • THERESAF
    No matter what you say---I'm mad that I have MS!
    I have my Tysabri infusion infusion this Friday and then I'll probably go out for lunch for entertainment.
           
  • lisa61

    I stopped my Rebif injections in my arms and legs because of the pain. Now my husband injects in my stomach or butt which is a vast improvement!! The emotions are like a roller coaster. I thought the cane was bad but then I needed to use a walker and now I am very thankful for my little walker I don't know what I would do without it. I do have an electric scooter which I use to get around the block for some fresh air with my dogs and that is a blessing!! Depression comes and goes...winter is the worse when it is so difficult to get around outside so I usually just stay home. Thank God for anti-depression meds they make life much better!! Everyday is a new day and you do what you can do and I feel very blessed that I have such a wonderful husband who does more than his fair share of the household chores and has a stressful full time job!! It could be a lot worse so I appreciate what I do have and what I can do today!!

  • midget

    Hi There!
      My name is Jennifer, and I was diagnosed with M.S. on April 12th, 1996! Which happened to be two days before my 21st birthday!  I have had alot of years to process this disease and think that I could help out phycologically, and emotionally!  
      I know that for me, the day I was diagnosed seemed like any other day for me. I wasn't quite clear on the definition of M.S. I wasn't sure exactly what I  had in store for me or what my life was going to be like from that day foward! Please feel free to call me or text me if you want a friend thru this nightmare! 913-514-4231...Don't hesitate or think it's weird! WE ARE FAMILY, and I plan on helping whoever I can whenever I can! Not everybody understands what we are going thru, but please know ..I DO !!! Jennifer

  • Victoria3
    I can totally relate! I was just diagnosed in October also and while I felt like I dealt with the diagnosis pretty well.....the isolation I've been going through is unbelievable! I've been relying heavily on my faith but I was also happy to find this resource in hopes that I could find someone to relate to. My name is Vicki....I need to edit my nickname! Lol
  • THERESAF
    Vicky, I feel so alone most of the time. I need puppy-kisses!
    Theresa
  • copesmom3
    how are you holding up? i was just officially diagnosed this week:(
  • Tracey1
    I hear you.  I need one to.  I was diagnosed in August 2012, and still trying to cope with this "new me" that i don't like at at.  I've always been so active and someone who'd run you over if you got in the way, now, complete 360  turn around, i can barely walk 20 feet and then legs so weak and feeble i can't walk.  I'm 49.  Never ever could i have ever imagined what has become of me.  The worst part is "you look just fine!"..........I've given up and just say "I'm fine" when someone asks how I'm doing. 
  • MSCathy
    Thanks for your reply and reaching out...I do appreciate it! I realize this is going to be a journey but then again just coming to the fact I have this is still so surreal to me! My doc wants to start me right away on Tysabri and I can't wait - hoping for the best on this one. Tooooo tooooo many changes taking place with ME and my whole new different world - just not used to the new me and not happy that I have to deal with a new me - especially for my wonderful husband and amazing sons - I just feel like they didn't get enough of the old me while it lasted! Thanks for letting me get some of this out :-)