13 YO daughter and husband both have ms
- momtodramaqueen
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- Location: Georgia
13 YO daughter and husband both have ms
She was started on Avonex and has had four treatments (only 1/4 of the full dose). We see the doctor tomorrow and he will probably increase her dosage. Can he do anything about the fatigue? She is sleeping 10 to 12 hours a night, taking long naps during the day and then falling asleep while I cook supper. This has gotten worse in the past couple of weeks.
Also, what can we do about the cognitive problems? We notice it mainly in math and when given a verbal list of things to do.
My husband was diagnosed 10 years ago and just started meds 2 years ago.
Sorry for the long post - just need to talk with someone who understands.
Thanks!!
Had a follow up MRI in March of this year - no new lesions & no relapses!!!
- Loobie
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I have a 9 year old daughter and I worry constantly that she will start to develop symptoms. There have also been recent postings on various pages (I know the NMSS had one, but I've also read it elsewhere) about the higher the prevelance in MS in kids is when it is the father who has it.
I can't pretend to understand how you must feel right now. It must be overwhelming, and you will definitely be in my prayers. I am a 40 yo. with MS, but I too have lost some ability when I have to keep track of multiple things. It is not all the time, so I feel like it's related to the MS. I would imagine that you just keep feeding her verbal list of things to do, but make her write them down as your telling her the list.
I have started making lists and it has helped me enormously. I imagine some of that is due to actually getting organized, but it really has. We camp a lot and here in the last few years I was forgetting stuff every time we would go. When I would pack, I would get confused and kind of mill about forgetting what I was looking for. I have since made lists I store on Word, and it has helped me not only not forget things, but also to conserve the energy of going up and down the stairs 20 extra time looking for God knows what.
I hope you all figure it out. You have a lot to deal with, but you also don't seem to be panicked, which is essential to deal with it properly. Good luck and God bless You and Yours.
Lew
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Re: 13 YO daughter and husband both have ms
Like many, Walker assumed he had MS but he didn’t want to face the facts. The day after he was officially diagnosed, Walker moved across country — from Philadelphia, Pennsylvania, to San Francisco, California. This physical move allowed Walker to keep his diagnosis a secret.
“I’ve always been sort of an open book, so I remember the hardest thing for me was the desire to keep it secret,” he says. “And the thought, ‘Why am I so worried to tell anyone? Is it because it’s such a bad disease?’”
It was a feeling of desperation several months later that led him to start a blog and post a YouTube video about his diagnosis. He was coming off of a long-term relationship and felt the need to share his story, to reveal that he had MS.
“I think my problem was more of denial,” he says. “If I could go back in time, I would have started to do things a lot differently in life.”
Today, he typically tells others about his MS early, especially the girls he’s looking to date.
“It is something you have to deal with and it’s something that’s going to be hard to deal with. But for me personally, in three years my life has improved drastically and that’s from the day I was diagnosed to now. It’s not something that’s going to make life worse. That’s up to you.”
Still, he wants others with MS to know that telling others is ultimately their decision.
“You are the only person that is going to have to deal with this disease every day, and you are the only one that is going to have to deal with your thoughts and feelings internally. So don't feel pressured to do anything that you aren't comfortable with."
I remebered this one quote on this site The world breaks everyone and afterward many are strong in the broken place. But those that will not break it kills. It kills the very good and the very gentle and the very brave impartially. If you are none of these you can be sure it will kill you too but there will be no special hurry. then i feel something is right on this quote so I started reading about motivational quotes and fight and accept who I am. this might help people who had "MS" https://ponbee.com/life-sucks-quotes/. I'm proud of myself!