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!

[lemstar]

Its a thin line you walk....whether to exercise or not. Here is the issue: when people with MS overwork their muscles, extreme fatigue can set in. That being said, its probably even more important for us to stay fit, and yes, to exercise. If you could find a PT with MS experience, that would probably be a good thing, and they could advise you best (if they really have a lot of MS experience, like my PT does) on how to exercise. You will become your own best guide as to how much is too much, and it won't kill you to find that out....
Have you seen an MS specialist yet? That could be a good idea, as they are the best ones able to evaluate...
Good luck, and come back to tell us how you are doing...

[mjan]

OH dear.. you just touch my heart some for sure~

Have you called your neuro or the neuro on-call? I know you are not yet diagnosed, but there IS treatment while you wait..there is. ASK them what you should do.

Secondly to go to Physical therapy they need a MDs orders. AND that P.T. person would need to know you have neuro issues, possibly MS.

PT therapists can assist the doc in observing what you can and cannot do, make recommendations and work with your muscles etc. You probably could use a wheeled walker, again you need an order from MD for insurance to pay for it. You can buy them yourself to get it right away.
Also they do home PT. That way when you feel like you may fall, you have the walker to hold on to AND it has a seat and often a basket to put your school books etc in. I mean, its a BIG decision for anyone, but how would you feel trying it out at home first? Just a suggestion..

Do not put up with this..and wow..give that friend of yours a BIG hug. I will be following you now..wishing you get the best care and provider. Again, do you see a MS neuro? They specialize in ONLY MS cases, not a general neuro who knows about MS and how to diagnose it/order tests etc, but lacks the expertise.

Hugs to my huggable one~ Jan

[quotefanatic]

Thanks so much for the helpful advice! And yeah, my friend is great about helping me out..

No, I don't see a nuero that specializes in MS. Haven't asked my parents either.. I will certainly consider it!! I mean, how bad does the walking have to be to need an assisting device?

I'm just scared to go in and ask about physical therapy, to be told I'm not that bad. I haven't dealt with this symptom until now, and I don't know how doctors will address it since I am not yet diagnosed.. Advice?

Best wishes!

[lemstar]

I am afraid you could be right about the response you get from everyone regarding your concerns.
Maybe you could show your parents this website, and ask to just see an MS specialist once? Sometimes, even professionals (neurologists too) can be ignorant about MS. It doesn't show up as clearly as some disorders, and can be doing damage while one is waiting for a diagnosis.
And do your parents see how hard it is for you to walk? Do they believe you, or maybe think you are exaggerating? As far as a walker, maybe if you start PT, you will begin to feel stronger.
It does sound like your situation warrants some more attention. MS is so invisible to other people that its hard to imagine how it feels. Please share this website with your parents, and ask if you can see an MS specialist, and ask that doc about PT.
Good luck, and keep us posted....

[mjan]

Perhaps you could pose the question to your parents that you want to see a MS specialist to rule OUT MS. But yes make your case with the near falls so you do not get hurt.

Once you get professional eyes on you, THEY will help in getting yet more help. Don't be scared in getting more help; but your doc will have to order the P.T. Tell him/her that you want to help your walkng and legs get stronger.

Is it your balance that is off, or weakness..or both?

At least know WE are on your side.. and WE don't give up hon.

Hugs, Jan

[quotefanatic]

Okay, so I talked to my mother. It happens to be that my nuero is an MS specialist! I had no idea.. weird!

Anyway, I think my parents may think I'm exaggerating a bit.. Most of my walking problems are seen during the school day, as that's where most of my days are spent.. so it's not too surprising.

Also, my mother most likely has ms. She already has one lesion in her brain, and optic neuritis. So, I almost feel like I'm constantly being compared to her.. As though my symptoms have to be the same as hers, which is obviously untrue with ms.

Though, she does listen well, and is never unsympathetic. As I brought up the idea of a service dog (for balance) and she said we'll consider that once I get a diagnosis..

And I have both weakness and balance problems.

Thanks for the support!