looking for someone to talk to..Im a 42 year old woman who has just been diagnosed

Home Forums Newly Diagnosed and ‘Limboland’ looking for someone to talk to..Im a 42 year old woman who has just been diagnosed

This topic contains 8 replies, has 4 voices, and was last updated by  Lelainia 7 years, 8 months ago.

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  • December 31, 2011 at 1:19 am #6492

    Anonymous

    I woke up one morning not being able to see well,from there 5 docters 2 mri s now copoxone and ivigi……i just got told i cant walk,,,,i have a 2 year old…please any advise or he;lp

    January 1, 2012 at 5:53 pm #6971

    Lelainia
    Participant

    hi angelwendt,

    I am so sorry you’ve had to go through this. What type of help or advice were you looking for? I’ve been through IVIG and I am on Copaxone, so maybe I can help.

    January 3, 2012 at 4:32 am #6972

    Anonymous

    hi there thanks for getting back to me, To be honest I just feel so lost, my husband works out of town and this is all new for me.I start my second run of ivig this week, and just would like to talk to someone who has been through this. do you have pain? How long have you had ms? anything you want to share with me i want to know it all the good and the bad..I am looking forward to hearing back from you. thanks angel

    January 4, 2012 at 2:02 am #6973

    Lelainia
    Participant

    Hi Angel,

    I’ve been diagnosed with MS for 4 years, but I’ve had it for much longer. I do have pain-I have migraines which are pretty severe, from the damage MS has done to the top of my spinal cord and I also have plantar fasciitis from walking off kilter, again because of the spinal cord issues from MS.

    I don’t know where you live, but if you are in Canada or the US, the MS societies are a great source of information and support. In Canada, we have peer support volunteers, who are people who have been living with MS for some time who are willing to be a phone contact and source of support for those newly diagnosed. All you have to do is call and ask about it and they staff at your local MS chapter can connect you. As well, the MS society has all kinds of helpful books and information pamphlets of a varity of topics that are available to you FREE of cost.

    They also have a newly diagnosed series that is run by the chapters that anyone with MS who is interested in can attend. It covers a wide range of topics and is very informative. If you can, I strongly recommend calling and getting connected with your chapter. It will help you feel less alone and many times people with MS feel better when they have reliable information about the disease that they can draw on. It can be alot to take in in the beginning and it’s easy to feel overwhelmed. It helps to have somewhere to call when you have qustions.

    How is your IVIG going? I guess with it only being your second infusion, it may be too soon to tell. You said you are having trouble seeing and you’re unable to walk. That’s really hard and I am sure it feels scary. If it helps at all, I’ve had times where I couldn’t feel my legs for months and then suddenly, it resolves. I’ve never been unable to walk, but I’ve had total numbness from my collarbone down and trouble breathing. Sometimes the myelin can repair itself, so don’t lose hope.

    January 4, 2012 at 4:59 am #6974

    Anonymous

    thanks for all the information, I live just out of vancouver about 40 min.The hardest part is feeling like Im now on the outside looking in at the world.

    January 4, 2012 at 1:21 pm #6975

    Lelainia
    Participant

    Well then, you are in my neck of the woods, so you DO have access to the Lower Mainland chapter, which has all these great resources!

    The first year is a big adjustment period. It’s like being thrown into the deep end of the pool, but if you can hang in there and get some support and information, like I mentioned, it does get better. MS is not going to go away, but you can learn how to cope with it in ways that work for you and over time you will figure out just how much room you’re willing to give it in your life.

    Have you been assigned to an MS clinic yet?

    January 4, 2012 at 4:05 pm #6976

    Footsteps
    Participant

    Welcome!

    I’m sorry that things are so tough right now. MS is really hard/scary when you’re just diagnosed. So Overwhelming and so out of control. Trying to do the juggle with kids is really hard I’m sure! My advice would be to take the help that you need, and the help that’s offered to you. I hope that people are supportive! and just accept the emotions and fight! Fear is normal, and talking and getting connected helps.

    Lelainia is absolutely right about the MS society! They also have resources for talking to you children and for caregivers, to help your whole family.

    I hope you’re able to get aclimatized! Good luck!

    January 4, 2012 at 6:48 pm #6977

    F.U.MS
    Participant

    Hey angelwedt. Sorry to hear about your new challenge in life. Rest assured, all of us here have been through a lot of the feelings you’re going through. I’ve had MS for 13 years and the first two years were the hardest. Things did get a lot better and MS hasn’t stopped me from doing all the things I love to to. It slowed me down at the beginning though. Stay strong. Contact your local MS Society and never give up.

    Aaron

    January 7, 2012 at 1:38 pm #6978

    Lelainia
    Participant

    Hi Angel,

    I just got an email yesterday afternoon from the Lower Mainland Chapter that they are starting a second Younger Persons with MS support group. They will be meeting once a month at the MS Soceity Office. If you are interested, please contact the office to sign up.

    If you want to know a bit about my experience with a Younger Persons support group, I wrote about it here: https://someonelikeme.ca/2011/10/11/strength-in-numbers/

    Hope you are doing okay. Hang in there!

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