13 YO daughter and husband both have ms

[momtodramaqueen]

I am so glad I found this site. My daughter was diagnosed a month ago. We are all still shocked. Her sympton that had us seek medical attention was both of her feet were numb. This lasted for about a month. After seeing her Ped. and Ped. Neurologist who laughed us out of the office we took her to my husgand's MS Neurologist. He immediately did an MRI and after seeing all of the new and old lesions said she has probably had it for about 2 years. Looking back, she is now recognizing some symptons that have been around. She has vertigo, nauseness, major fatigue, she's clumsy (stumbles around a lot) and she has some cognitive issues as well.

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!!

[LindaR]

Dear Mom to drama Queen: Sorry to hear about your daughter and husband. Here's my sorry: I was diagnosed about 1.5 years ago with MS after a bout of Optic Neuritis. Started Avonex in March of 2004 just like your daughter (with 1/4 dose, 1/2 dose, etc.) In the beginning, I seemed to have horrible fatigue. My Neuro started me on Prozac which is the best thing I have ever done. Not only did it help with my anxiety, Prozac is also a stimulate and seems to help with the fatigue. I work full time and found that when I am tired, I come home at lunch and sleep for about 40 minutes (I am lucky enough to work close to my home) and that helps. I also found that the less I do, the more tired I become. If you stay active, you feel better.....just my thoughts.

Had a follow up MRI in March of this year - no new lesions & no relapses!!!

[Loobie]

Momtodramaqueen,
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

[3verydaySurvivor]

I remember hearing ‘white noise’ and not being able to focus on the discussion with my doctor,” says Blare. “I remember a bit of what we talked about, but I think I was just staring a few inches away from his face, and avoiding eye contact with my mother as well who was with me. … This translated into my first year with MS, and with me not taking it seriously.”

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!