Any1 in the same boat?

[fairycarey]

hi,

i'm 18 and i've had MS since i was 14. i'm only now dealing with is it's crazy. i started off with double vision then i started avonex. my double vision is only at one side now and that brilliant thanks to steroids but now to date i still ave double vision to one side, my right leg/knee is messed up i can't walk long distances, i get tingles in both legs, numbness from time to time on the right side of my face, my right hand gets tremours but they are not constant and it goes week. for my leaving cert i was given a scribe. constant headaches, fatigue, weak legs and now my new problem of shocking pain in my left hip and it goes down into the outer side of my left knee. i go to my neurologist and i have been on steriods 5/6 times and it doesn't seem to work anymore and now wen i go to her she tells me i'm fine and there is nothing wrong with me? i mean i get on with it and am happy i'm not worse but i ave alot of problems and i'm only 18? i ave a physio programme but i find i'm not committed but i do go swimming once a weak which i thought would be great for my hip and it was until that night.

If any1 has any problems like this can they please just put it out there it would be great

[Octarine]

Hi, I "bumped" yesterday because that keeps your question high on the list, but I didn't know how to answer right away.  I've been giving you a lot of thought since then.

Shelly is absolutely right; your neuro should take you more seriously.  Any way you can get another?  

You wanted to know if anyone has the same stuff going on.  I have a lot of yours and it's enough to keep me looking for an answer, but it's nothing like what you face every day.  In case it helps, one of my legs tingles/hurts/gets electrical storms when I walk, and one of my eyes randomly gets stabbed from behind; the other one "just" gets migraines.  My right hand has tremors that come and go so I spill things randomly.  There are other things I won't bore you with. But the overall fatigue makes me want to curl up and hibernate sometimes in the middle of public places.  

But you make me grateful that I'm still as fine as I am. I'm sorry you have this so young.  Actually I'm pissed off that you have this so young (I'm late 40s).  Don't know if it helps, but I'd like to walk up to the gods and shake my fist in their faces and curse them in ancient, gory ways. ("May Ishtar clothe you with leprosy" is one of the milder ones.)

That may offend the Christians on this site (who are wonderful, friendly people), but not the readers of Sir Terry Pratchett, an incredibly funny writer and, unfortunately, a fellow neuro patient.  The first help I can offer you is:  try to escape into his Discworld books (unabridged) on audio from your library.  If the library doesn't have them, maybe your double vision qualifies you for a talking books programme.  In the US, the Library of Congress loans them with free postal service to legally blind people.

Second, maybe try to find reasons to commit to physio.  On one of the international MS sites someone asked, "Looking back, what do you wish you had done differently when you were first diagnosed?"  Many said "Exercise more."  Here are some possible reasons to commit to physio:

- to meet other people with MS you can talk to.
- to learn to move in ways that hurt less.
- you have a great attitude ("I get on with it"); physiotherapists love that and will praise you and help you tap into it even more.  Who doesn't need a little praise?
- mild exercise actually helps with the fatigue.  I was skeptical when I heard this but for me if I do the physio in the morning, I can keep going more that afternoon.
- to have a regular routine (if you don't already).  If you've just finished your cert and don't have work, keeping a schedule could help you feel like you're still part of the world.  (Though I hate to bring up employment since it sounds as if living your life is a full-time job already.)

What would I give for a magic wand to pouf you into a healthy, pain-free teenager?  Please keep writing us and tell us how you're doing.

Octarine

[Octarine]

bump

[msjinx]

hi there i know what you mean about the tingleing , if i walk any distance i find my lower back and legs feel like they are alive with electricty , and i get pains all the time sometimes for days on end , other times just spams , my eyes are effected to i have uveitis , doctors say not related , cant see how it cant be , pardon the pun .....ha ha ...let me know how you are keepin ....

[sllowe]

Hi there,

Have you been to a neuropthamologist? If it were me, I would get my eyes checked out right away.  It's important - you need your vision.  The neuroopta will make sure there is nothing pressing on your optic nerve, and other things.

I'm sorry you have new problems.  Your neuro should here about them and if he or she dismisses you and what you describe, please consider looking into another neuro.  You are young, and you have MS, you need to be with someone for the rest of your life who will take you serious when you describe a new symptom.

When was the last time you had MRIs?

Thank you for coming along were are one big happy family, WELCOME!

Hope to see you around,
Shelly

[Lulu54]

*bump* because I know someone out there can give some answers or clues......

[Lulu54]

Hi Fairycarey,
Welcome to the MS forum - there are a lot of knowledgeable people here who will be able to give you advice on what to do next. I was just DX'd in Sept.. so am too new to know much yet.  

Were the steroids given to you by IV? I understand that is the way they are effective in controlling the swelling that affects our lesions and the pill form is pretty useless.

I have begun swimmming too and it does feel good to slip into the water and have the stress off my body.  I hope your can stick with the swimming and give it a try more than once.

Welcome again, I'm sorry to hear you are so young and already dealing with the daily living with MS.
My best to you,
Lulu