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  • kwhalen88

    Hi everyone, this is so hard for me. I hate the new change in my entire life that recently happened 2 months ago. I all the sudden had right facial numbess, right arm/hand numbness and writing difficulty, and a hard time expressing things as quicking as I wanted to verbally. So, I went to my primary and I could do all of the neuro test her wanted me to do (I had already done them on my own since I'm an RN and was freaking out). So, his words were "So, what do you want me to do?! Since you pass your neuro test.". I was extremely upset knowthing things were not right and he made me an appointment for 3 months later..... Crying I called my pediatrician brother who lives in a small town 5 hours away and he told me he talked to his neurologist and they thought I needed to go to ER or come to his clinic for an MRI. Being money conscience and knowing the health care system in the hospital I work in I was pissed and refused to wait in ER and pay $75 just to go in I agreed to drive 5 hours to him. Thats when I found out I had lesions on my brain. This turned my whole world upside down. Got transported to my major hospital for all the work ups.... Now two months later my lesions are larger and more. My doctor wanted to start me on Tysabri so I finally came around to the idea and today I find out I am JCV highly positive. I thought the punches couldn't stop coming but apparently they are... So now I'm begging for people who understand when I don't understand myslef :(. I hate telling my new fiance I'm so tired I laid in bed all day or all of the mood changes and now that I need to do a medication that I inject 3 times a week. Don't get me wrong hes been fantastic through it all but no one understands and at this point I feel so alone.. Waiting on the call from Copaxone to start that since I'm only 27 and were getting married 8/8/15 and want to have children right away!

  • ineverything-ca

    It's tough when no one really understands, even if they are sympathetic. I was just diagnosed in November 2014 and there are days when I fell like I can take on the world, and other days when I wonder how I'm going to get through it. I think it does get better, maybe not easier, but more manageable. We can do this. You can totally do this. 

  • fearsgraves

    Kwhalen88,

    I am so sorry to hear about your diagnosis.  I was diagnosed in October and the same thing happened to me.  I was hoping to start on tysabri as well and then I too had JC  virus.  I was totally bummed.  The difference being that I am 50 years young and don't have time to be sick but time waits for no man.  I just started on copaxon and it seems to be working out well.  If you would like to talk let me know and I will give you my information because I feel like I'm blind-sided by this too.

    just realize that your life will go on and  August 08,will happen.  Just know that you will give yourself time to grief and you will recover.  You are young, you are a strong beautiful woman.  This disease does not define who you are or what you want for your life.  Let's take charge and live our life to the fullest.

    best,

    Fearsgraves

     

  • MS Navigator Jess

    Good morning, kwhalen88.

    I'm so sorry you're feeling awful.  A new diagnosis is so scary and overwhelming, and I'm so happy you found 'us'.  If you have a chance, I'd like to invite you to call us- we have MS Navigators here that can provide information and support.  There are a lot of different support type programs from phone support, in person groups, and this right here- our online community.  We are also here to provide support and information to your fiance if he has questions or would like to talk.

    1 800 344 4867

    Jess

  • kwhalen88

    Thanks everyone, sorry for all of the typos! Ha I was just so upset that night and thoughts were thinking faster than my fingers! I did end up calling the help line and it was good for me. Planning on making connections on here as best as possible!

  • cpaganrn

    Hi kwhalen88-

    I am sorry to hear about your new diagnosis. I too have been recently diagnosed (Sept. 23rd, 2014 to be exact). I am also a RN, and completely relate to your fear.

    My symptoms started with left side facial tingling for a couple weeks prior to my diagnosis. I also had some sensation/pain/numbness issues in and my left arm on and off a couple years prior (that we now think was also probably related).

    For me, I went from seeing my pcp one week, a neurologist the next, a brain MRI...and then total life-altering diagnosis the following day. 3 weeks for my life to be COMPLETELY upside down.

    I am in a much better place 4 months later, and have even started Rituximab infusions (I unfortunately also have a dx of rheumatoid arthritis which allowed me to get it approved through insuarnce- but my neurologist also uses it often for his MS patients because it reduces the lesions).

    If you are interested in talking more, let me know. :)

  • pattys86

  • livelifenow2
    It definitely sucks but if you keep a positive attitude excersise even when you think you cant. Buy a stationary bike for home too so if you don't want to do an excersise routine then you can still keep your legs and feet moving. I also cook the majority of the time at home and from scratch so I know exactly what I am eating. Good luck and i wish all the happiness and good health always.
  • hollyfroude
    It gives a lesson that how you can modify your life in a good way. By some changes you can live a happy and healthy bestessays reddit life. Modification in your life is very compulsory it gives you new idea of living.

     

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