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Just diagnosed with MS today, not sure what happens next

StephidabefidaStephidabefida Registered User regular
edited March 2012 in Help / Advice Forum
So, yesterday I woke up with left side of my face and my left hand numb. I called my doc and he told me to go to the ER. After numerous MRIs they diagnosed me with MS. Today my left foot and most of my leg has gone numb and I can't walk really well. My nerologist is putting me on some pretty aggressive drugs so I'm hoping that will make this flare up die down. Anyway, on to the advice part. I don't quite know what to expect now. My family is taking care of my 2 three year olds right now but my husband is in the military and we won't always be lucky enough to have help nearby. Does anyone have any advice on how to handle this? It better not mess up PAX East!

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  • LawndartLawndart Registered User regular
    So, yesterday I woke up with left side of my face and my left hand numb. I called my doc and he told me to go to the ER. After numerous MRIs they diagnosed me with MS. Today my left foot and most of my leg has gone numb and I can't walk really well. My nerologist is putting me on some pretty aggressive drugs so I'm hoping that will make this flare up die down. Anyway, on to the advice part. I don't quite know what to expect now. My family is taking care of my 2 three year olds right now but my husband is in the military and we won't always be lucky enough to have help nearby. Does anyone have any advice on how to handle this? It better not mess up PAX East!

    Honestly, your neurologist will be your best main source of advice, since he knows what type of MS you have and what drugs might help alleviate it.

    The M.S. Society also has a lot of information on living with M.S., including this page for the newly diagnosed.

  • SeptusSeptus Registered User regular
    Oh, I'm so sorry. Aside from the neurologist recommendations, on the mental health side, I would strongly suggest checking out a support group to try and prevent and possible depression or stress getting the better of you, to leave you better equipped to deal with the physical problems.

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  • evanismynameevanismyname Registered User
    I don't have any advice but I hope you find a way to manage. Good luck.

  • R0land1188R0land1188 Registered User regular
    Weigh your options with your doctor first before trying anything, and do not be afraid to try something new if it isn't working.

    Also, the disease takes a huge emotional toll as well as a physical one. Septus is right, find a support group and the more strength you have to fight the disease the better.

    Finally do not ignore it! Though it may seem like nothing is wrong one day you can wake up and the disease hit you like a ton of bricks in your sleep, keep up with it, and talk to your doctor regularly.

    My mom was diagnosed in '90, and thought nothing of it, when I was in middle school it hit her hard and I had to step up and do a lot of the domestic work around the house. She has gone through hell, mostly due to her refusing to believe she had a problem at first, and then not using the resources available to her. She is doing better now physically but mentally she has been stripped of all confidence and independence. I don't wish the same on you.

    Be strong.

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  • LewieP's MummyLewieP's Mummy Registered User regular
    Woo, you're going to PAX East! Immediately email PA and tell them - they will give you an accessible badge, and one for a personal assistant (who can be anyone you're going with, or meet up with when you're there) and these will enable you to jump every queue/line for anything, and allow you in a few minutes before the hordes. Use it, its really worth it.

    I have CFS/ME, (which can have very similar symptoms to MS) and went to Prime in 2008 where there were no passes like this - the enforcers and fellow PAXians were brilliant. The venue staff were crap, tried to prevent me from going to the front of the line where my friends were waiting for me - I couldn't queue up for long, it was too hard. The enforcers soon changed that. I emailed Kristen at PA before I went to PAX East in 2009, the whole team discussed it and came up with the badge plan. It made things so much easier.

    Plan your time there, include rest breaks, and if you even think you might need one, bring a stick/cane/crutches, and buy gel cycling gloves to wear all the time as your hands will hurt loads if you don't. When you're tired and need to sit down, just ask whoever is sitting on a chair to let you rest, they will. PAXians are the best people in the whole world!

    I'd third the support group/on-line support, talking to people with the same condition as me really helped - they understood exactly what I was going through, and helped me stay sane (ish).

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  • FonjoFonjo Registered User regular
    My wife's mother has MS. Like others have said, you should look into a support group. Also, educate yourself on the MS in general and ask your physician lots of questions.

    The best thing you can do is educate yourself right now.

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  • LunysgwenLunysgwen Registered User regular
    So, yesterday I woke up with left side of my face and my left hand numb. I called my doc and he told me to go to the ER. After numerous MRIs they diagnosed me with MS. Today my left foot and most of my leg has gone numb and I can't walk really well. My nerologist is putting me on some pretty aggressive drugs so I'm hoping that will make this flare up die down. Anyway, on to the advice part. I don't quite know what to expect now. My family is taking care of my 2 three year olds right now but my husband is in the military and we won't always be lucky enough to have help nearby. Does anyone have any advice on how to handle this? It better not mess up PAX East!

    Your husbands command should be there to help you out. It would be an absolute travesty if they were not - I've had my command come to the rescue for the wives of my buddies multiple times, from moving out of a house, to ensuring someone was there to watch their kids while their wife had hospital appointments. Tap into that resource as much as you need it - It's what the Omsbudsman are there for, and what we rely on if our families need help at home and we're not there. That being said - There is also a ton of good advice in this thread thus far.

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  • StephidabefidaStephidabefida Registered User regular
    Thank you guys for all the help. I am out of the hospital now so I can finally get on my computer! I have found a few support groups online that I have joined. I have an appointment with my neurologist on Thursday and he asked someone else with MS my age to come in and talk to me. My husband emailed Kristen about as medical badge for PAX so thank you for letting me know about that LewiePs Mummy. I am going to enjoy PAX, even if I have to do it sitting the whole time! We are also going to Disney World in May so I am going to be contacting them about handicap access just in case I'm not doing better by then.
    So far my husbands work has been really great. We aren't in a normal unit right now because he is on active duty green to gold so he is in with the ROTC. However, he technically belongs to Fort Jackson and they have sent us everything we need to get the ball rolling on EFMP. Now I just need the left side of my body back and I'm good to go! And of course, I'm left handed.

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  • LewieP's MummyLewieP's Mummy Registered User regular
    Oh, Disney is exceptional with disabled people - you park right at the front, there are wheelchairs for you to use, you miss all the queues - they don't even let you queue up, you have to go to the front, no choice (Splash Mountain I don't know how many times with my kids!), there are staff to help you in and out of the rides if you need it, your wheelchair is parked next to where you get off the ride or is locked down into the ride carriage if you can't get out of it and walk. The USA deals with us so much better than the UK, and France is even worse!
    Have the best time at both places!

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  • MrMonroeMrMonroe Registered User regular
    I'm very sorry to hear this.

    The first year will be the worst. Get ready for that.

    Stay positive, there's no way of knowing right now what course it will take. Keep talking to the doctors, and get second opinions.

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