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Just diagnosed with MS today, not sure what happens next
Stephidabefida
Registered User regular
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!
Stephidabefida on
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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.
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.
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).
For paintings in progress, check out canvas and paints
"The power of the weirdness compels me."
The best thing you can do is educate yourself right now.
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.
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.
Have the best time at both places!
For paintings in progress, check out canvas and paints
"The power of the weirdness compels me."
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.