Charcot-Marie-Tooth Disease Support Group

Hey I understand where you are coming from. I am 19 almsot 20 and have been living with this disease since I was born. It sucks really bad, but if you ever wanna talk know that I am here for you. I have been through it all and at least they try to put you on medicine I just have to wear leg braces and deal with everything on my own. Just try to keep your head up and stay strong.

I hear ya Kid!

I'm about as big a sour puss with a piss pour asitude as you can get when it comes to the pain and fatiuge this disease brings with it. I'm sure it's tough being a teen ager and trying to do all the things you kids do. My son is into the sports thing. I sometimes wish he would spend more time with dear old dad and help him with all the tough rasks I have to get done. I sometimes don't think he cares that I'm struggling so bad to try and keep up around our farm. Then I think, he's in his last year of high school. Let him try to take it all in. I don't want to stand in his way and be a burden.

Kid, you try and think about this. I did...remember this, there are many things that our maker put on this earth to enjoy. A warm sunny fall day when the tree's are all in there full color. To hold a new puppy and see the joy in his eyes. To gather for a holiday with family and friends and watch the little kids open gifts & enjoy a home cooked meal. To hug your parent or grandparent. Birthdays, 4th of July picnics, BBQ's,Etc.

I will live my life to the fullest. I will do the things I love, even if I have to crawl. I'm one stubburn German/Norw. I will SURVIVE..YOU CAN TOO. KICK THIS THING IN THE TEETH...TELL IT TO "F" OFF I"M GOING TO DO THE THINGS MY FRIENDS DO..SOME HOW...SOME WAY. If you need anybody to talk to..you don't be afraid to speak up. Just ask my sons..they will tell ya. If there's a way to get it done..DAD WILL DO IT!!!!!!!!

Chuck

Gah I had a whole reply written and my browser crashed. Anyway I just signed up so I could reply to this message.

I had the exact same problem with unbearable pain/nothing working. I was close to suicide over it a few years back but found a neurologist that was willing to try every med she could think of. Finally found my miracle drug for Neurological pain!

If you haven't tried it yet, I highly recommend Tegretol XR. It's a seizure med, kind of along the same lines as neurontin, but it actually HELPS! At least for me, neurontin did nothing but make my left eye twitch uncontrollably.

Anywho, if you decide to try it, have them start low dose and work up til you find something that works. I use between 100 and 300mg 2/day - any higher for me and my ability to reason starts to go away lol. The dr will have to do blood tests to check your levels for a while, have them start with a low dose (prob 100mg 2/day at first) then move up a little at a time if it's not helping. Make sure they do the XR (extended release) kind, otherwise you get peaks and valleys in the blood levels and it isn't nearly as helpful/causes more side affects.

The Tegretol cuts my nerve pain by at least 85%! I also take flexeril/cyclobenzaprine (muscle relaxant) on low doses to kill the pain in my muscles from the constant cramping. Between the two I'm doing about 90% better than I do off meds.

I always have a chuckle to myself when i read your discussion topic "fuck this"!!!! It is so raw and some days ohhhhh soooooo true. Sometimes you just feel like saying "cut, i am out of this movie...... thanks but no thanks""

i understand how you feel...i am 55 now but i remember my teenage years as being the worst of my life...i kept falling over and making a fool of myself as i refused to use a walking stick because it wasn't 'cool'...people can be so cruel...

sorry, meant to say that lots of folk had a good old laugh when i fell over...it didn't occur to them i might be hurt both physically and mentally......bxxxxxd's