When to...

[quotefanatic]

Hello,

I am not yet diagnosed, and still in High School. Been having symptoms for over a year, and pretty much all of them have been constant since the time they started. (Seeing nuero every six months)

Anyway, recently, I have had muscle weakness in my legs. Kind of like they're jello, and if I bend my knees to much I'm guaranteed to fall.. Anyone have a similar experience?

Well, I am a teen, and I did tell my parents about this. Then I told my nuero, who said to "wait and see if it goes away." I don't know when it's time to think about physically trying to muscle build? Or seeing a physical therapist?

My close friend helps me walk frequently at school (puts her arm around my waist), and at home I grab onto counter tops or anything available. My legs wobble and shake down my staircase, and I have to hold the railing on any staircase or else I will fall. Some days though, it's really not all that noticeable, while other days it's pretty apparent..

I know this is not bad at all compared to some people, but I would really appreciate some advice.

Thanks and best wishes to everyone!

[Redwings]

Hi quote:
Your post brings a few things to mind.

The first is that your parents could benefit from participating in either an online community or a support group(s) for parents of children with MS or another neurological condition that affects mobility. MSWorld's parents forum isn't particularly active, but they might try posting here, and there are other resources available to them. Your parents are probably stressed by your health condition, too, and they could benefit from support from other parents in a similar situation.

Second, a doctor saying "wait and see if it goes away" doesn't inspire great confidence, in me, anyway. A proactive neurologist would already have referred you for physical therapy, no matter what the cause of your balance problems, even if the cause isn't known for sure. It might be time to ask your parents to get you another opinion about your condition from another neurologist, particularly a pediatric neurologist. In your position, that's what I would do. I'm old enough to be your mother, and maybe even old enough to be your grandmother. But I remember quite well what it was like to be a teenager. And that's what my older self would advise my teenaged self to do.

This is where it gets a little bit tougher. Although you have a wonderful best friend who helps you to walk at school when your balance is off, it isn't your friend's job to be doing things your medical team should be helping you with. She isn't trained to be a mobility aide, and her "job" is to be your friend, not your mobility helper. There's professional help available for that, which is where your neurologist should be stepping in to get you the proper help. A good friend is priceless, ans shouldn't be stressed by doing things they might want to do but aren't equipped to do. They should be a friend and cherished for being a friend.

A physical therapist and/or occupational therapist is the proper and optimal person to be helping you with your strength an mobility issues. It might be that the best way to help with your strength/mobility problems is some kind of a helping "device," such as a cane, walker, a scooter or wheelchair, or even a "balance" dog -- a large service dog that helps support balance. Neither you nor your friend who's been helping you are trained or equipped to help when your balance is off.

So please, please, pleeeeeeeze ask your parents to intervene for you and have you evaluated by a physical and/or occupational therapist (and even strongly consider having you evaluated by another pediatric neurologist who's more proactive than "wait and see if it goes away" -- any untrained stranger could have said that...). Those "devices" are all things that are highly visible to the other kids at school... are you up to having them ask you about them or even make fun of you because of them?

You're a smart kid (think of that as a term of endearment, like Rick says to Ilsa in Casablanca, "Here's looking at you, kid"). When I was your age, I didn't have parents I could talk to. I hope you do, and I encourage you to talk to your parents about what you've posted here. I even encourage you to show them the replies you get here, including mine, to help all three of you come up with a plan for how to approach your leg weakness and mobility trouble, and maybe even a diagnosis for what's causing it all.

My best wishes are with you and your parents, and even your good friend who's been helping you. Please keep reaching out and asking questions here.