Even I can recall my mother being told this about me, and as a kid wishing I didn't have to keep growing! Surely some of you, and your parents were told the very same things? Seemed to be the stock answer for I don't know!
Your thoughts?
I honestly didn't have any symptoms when I was younger, aside from the muscle cramps that started in my late teens/early 20s. And those cramps were very minor and only started bothering me once I started to hit my mid-late 20s.
The cramping was brushed aside by my former doctor and it was even misdiagnosed by my first neurologist (I was diagnosed with Benign Cramp and Fasciculation Syndrome), so that was extremely annoying because I knew something wasn't right. Even with my fathers medical history of HIPN, they still didn't take into consideration that this could be connected. Luckily my new PCP sent me to a different (and much better) neurologist who was able to properly diagnose me with CMT, and in turn, diagnose my father.
My symptoms came on really early (even though my diagnosis didn't come until 1984, the year I turned 29). I was punished for 'toe walking' and ridiculed in gym class for being slow and unable to touch my toes.
Hopefully the days of being ridiculed are over, but still sorry that you had to go through this.
One of my neighborhood buddies suffered from Cystic Fibrosis, and I know what he went through! I got in many a scuffle about that, until he finally told me it was embarrassing to be defended by a 'girl'!
I had a horrible time in school because it was near impossible for me to do things in gym. I was bullied by teachers and students. One teacher in 4th grade got upset with me because I kept moving to the back of the line when we had tumbling or relay races. I simply could not do these things. One day she grabbed me out of the line and shoved me and told me to go change out of my gym clothes. Pushing me caused me to fall and I can still feel the pain of the floor burn. Parents didn't confront teachers in those days. At least mine didn't. Eventually I was taken to a make shift children's crippled clinic at an Armory about 50 miles from where we lived. We sat for hours waiting to see a doctor. I remember being told to touch my toes. Walk on my toes, walk on my heals....I couldn't do any of these things. The doctor concluded that I just had lazy muscles and would out-grow it. I had constant leg pain. Cried a lot. Yes my mom figured it was growing pains. In the early 1960s no one had heard of this disease.
I'm sorry, that's horrible. It's hard enough being bullied by your fellow classmates, but when adults do it it's exceptionally difficult.
braylin's gramma said:
I had a horrible time in school because it was near impossible for me to do things in gym. I was bullied by teachers and students. One teacher in 4th grade got upset with me because I kept moving to the back of the line when we had tumbling or relay races. I simply could not do these things. One day she grabbed me out of the line and shoved me and told me to go change out of my gym clothes. Pushing me caused me to fall and I can still feel the pain of the floor burn. Parents didn't confront teachers in those days. At least mine didn't. Eventually I was taken to a make shift children's crippled clinic at an Armory about 50 miles from where we lived. We sat for hours waiting to see a doctor. I remember being told to touch my toes. Walk on my toes, walk on my heals....I couldn't do any of these things. The doctor concluded that I just had lazy muscles and would out-grow it. I had constant leg pain. Cried a lot. Yes my mom figured it was growing pains. In the early 1960s no one had heard of this disease.
Lawsuits have changed a lot of this, as far as bullying and abuse, though I know it still happens. Doesn't make it right!
I had terrible pain & cramps in my feet & calves that were dismissed as growing pains. Still haven't grown outta them at 46 sooo...LOL I was clumsy and fell often, was never first or second running but usually managed third or fourth. Always knew "something" was holding me back, kinda thought it was because I didn't have Dad around. Lookin back, many kids were much less able than me just due to weight or other worse issues. And I read so many stories about kids getting hit hard by CMT so much younger & my heart breaks. This is why I am working toward raising awareness to a whole new level!
Hi Richard,
I know who you are, you grow the gorgeous sunflowers, right, and have the dog named 'Moo'? I was looking at the pics the other day!
Glad to hear that you are one of those with a voice! Please feel at home to post some info or discussions on CMT, I am just someone who jumped in to help get this group going! I believe it is important to all of you to have it, and for it to be active!
Please don't be a stranger!
Wishing you well,
SK
Here's another discussion I wanted to bring back up for discussion.
I had terrible pains in my legs when I was child and they were kept as growing pains.
Hi HM,
This is asked at each visit to my Rheumatologist, and it seems as though everyone I have talked with in the waiting room experienced 'growing pains', which tells us that the early warning signs were there, and dismissed. Pediatrics need to expand and perfect their ability to diagnose.
I hope that you are continuing to feel the positive effects of the PXT3003.
Be well, be happy,
SK