New here.

[Guest guest]

Hi everybody. I'm new here. Just saw my NEW neuro last week. He

thinks I probably have CMT. He didn't want to redo all the tests

until he got my file from my old neuro (lots of problems there, but

that's another story).

Anyway, I thought I'd throw out some of my symptoms and see if

anyone has any ideas or pointers for me.

1. weak ankles - I've had bad ankles as long as I can remember. I

roll them over constantly (at least my old neuro got me into AFOs).

I have always rolled onto the inside of my feet when I walk.

2. numbness - legs go numb when crossed, hands go numb pretty much

any time they want, feet go numb when I run (or should I say ran

since that is now past tense), occasional facial numbness....most of

this has been going on since I was 18 (I'm 35 now)

3. drop foot - lots of tripping, always catching my toes

4. balance - I have terrible balance, it gets worse in the dark or

dim light...especially on uneven ground

5. weakness - some days my hands feel very weak, can't carry much,

always dropping stuff, can't open jars, after hammering or using

weed-eater my hands claw for 15 minutes - 2 hours

6. burning/twitching - sometimes I feel like I am on fire, like

right now, my shoulders burn so bad I can't hardly stand it...I also

have a lot of twitching. It happens in lots of different places,

but usually just on muscle at a time.

7. FATIGUE - The fatigue has to be the worst symptom. I mowed about

half the yard Monday and was wiped out until today. We had a " fun

field day " at school (I'm a teacher) on Friday. I was still having

problems getting around on Monday morning.

Does this sound like CMT to you guys? After all, you are much more

experienced with CMT than my neuro is. He said he " has a couple of

patients that he is pretty sure have CMT " . Any helpful ideas?

Thanks,

Lynn Woodworth

[Guest guest]

Hi Jord Mama,

Welcome to the group!!

Sounds like your son had wonderful results! Congratulations!

My daughters experience is very similar to your sons.

She didn't get her helmet until she was 8 months, using a local

helmet and didn't walk until she was almost 15 months. She took her

sweet time too!

Helmets/bands are amazing. It is very sad to think that a lot of

parents aren't even offered that option. :-( I knew nothing about

helmets/bands until I came to this group 2 years ago. You were very

fortunate to have the ped that you did.

Congratulations on your pregnancy!!

, mom to Makenna LLUMc helmet grad '03

--- In Plagiocephaly , " jords_mama " <cvhiggins@b...>

wrote:

>

> Hi,

>

> I just joined this list to thought I should introduce myself.

>

> I am 30 yrs old, and the proud Mother of our precious 21 month old

> son, Jordan. I am currently pg, 13 weeks gestation.

>

> My son showed signs of a flat spot from about 3 mths old and I had

a

> REALLY hard time getting our local doctor to take notice, it wasnt

> til we saw the paediatrician at the hospital (were there about

> something else) and she had heard of somewhere that was able to

> help, she looked into it and personally phoned me and told me she

> had sent a referral...well as it happens that referral got lost!

So

> she sent another and finally we got in to the plagiocephaly clinic.

>

> The doc was pretty good (wow the clinic was so busy! its amaising

> how many bubs have this condition) and referred our son to get a

> helmet fitted. As my son was about 9 months old at the time the

doc

> was a bit reluctant as he was over that 8 month mark (apparently

his

> head growth had slowed right down by 9 mths). We got the helmet

> made, but our son only ended up wearing it for 2 to 3 months, but

it

> was pretty amaising how much it improved in a short time. I have

> noticed since he has been walking (a late starter at 14 mths) that

> its looking heaps better! Its amaising how so many ppl dont know

> about the treatment available. Phew sorry that was a bit long,

but

> thats our story.

>

> Oh and just for the record, I live in Brisbane Australia.

>

> Regards,

>

> Jords Mama.

[Guest guest]

Hi Welcome to the group. Thank you for sharing your story and

congratulations on #2!

Sue

Colin F., 13 mos.

STARband grad 9/04

brachy

--- In Plagiocephaly , " jords_mama " <cvhiggins@b...>

wrote:

>

> Hi,

>

> I just joined this list to thought I should introduce myself.

>

> I am 30 yrs old, and the proud Mother of our precious 21 month old

> son, Jordan. I am currently pg, 13 weeks gestation.

>

> My son showed signs of a flat spot from about 3 mths old and I had

a

> REALLY hard time getting our local doctor to take notice, it wasnt

> til we saw the paediatrician at the hospital (were there about

> something else) and she had heard of somewhere that was able to

> help, she looked into it and personally phoned me and told me she

> had sent a referral...well as it happens that referral got lost!

So

> she sent another and finally we got in to the plagiocephaly clinic.

>

> The doc was pretty good (wow the clinic was so busy! its amaising

> how many bubs have this condition) and referred our son to get a

> helmet fitted. As my son was about 9 months old at the time the

doc

> was a bit reluctant as he was over that 8 month mark (apparently

his

> head growth had slowed right down by 9 mths). We got the helmet

> made, but our son only ended up wearing it for 2 to 3 months, but

it

> was pretty amaising how much it improved in a short time. I have

> noticed since he has been walking (a late starter at 14 mths) that

> its looking heaps better! Its amaising how so many ppl dont know

> about the treatment available. Phew sorry that was a bit long, but

> thats our story.

>

> Oh and just for the record, I live in Brisbane Australia.

>

> Regards,

>

> Jords Mama.

[Guest guest]

Thx Hannah, that was really interesting, definately something for me to look into (the tort thing) between now and May when bub #2 is expected.

I took photos earlier of Jords head so will upload them and email them in later.

Regards,

Ronni

(Mum to Jordan and baby #2)

[Guest guest]

Hi ,

Thanks...my sons results are not outstanding by any means, but there is definately an improvement...tis upsetting that we had to wait as long as we did and therefore didnt get half the result we were hoping for. The band that Jordan had made looks very simular to the starband, but I dont know for sure if thats what it was called. Believe it or not but the ped that we had was in actual fact finishing off her studies, so I dare say very diligent and keen to go the extra mile, unlike a lot of other docs out there, been in the system too long, content on doing a half hearted job and a lack of thought of the possible outcome of their actions. (Sorry this is one thing that REALLY gets to me! There are just too many docs out there that have lost their empathy for the profession).

What the the outcome with Makenna's plagio? I hope you had some success.

Jords Mama (Ronni)

Mum to Jordan and baby #2

Re: New Here.

Hi Jord Mama,Welcome to the group!!Sounds like your son had wonderful results! Congratulations!My daughters experience is very similar to your sons.She didn't get her helmet until she was 8 months, using a local helmet and didn't walk until she was almost 15 months. She took her sweet time too! Helmets/bands are amazing. It is very sad to think that a lot of parents aren't even offered that option. :-( I knew nothing about helmets/bands until I came to this group 2 years ago. You were very fortunate to have the ped that you did.Congratulations on your pregnancy!!, mom to Makenna LLUMc helmet grad '03> > Hi,> > I just joined this list to thought I should introduce myself.> > I am 30 yrs old, and the proud Mother of our precious 21 month old > son, Jordan. I am currently pg, 13 weeks gestation.> > My son showed signs of a flat spot from about 3 mths old and I had a > REALLY hard time getting our local doctor to take notice, it wasnt > til we saw the paediatrician at the hospital (were there about > something else) and she had heard of somewhere that was able to > help, she looked into it and personally phoned me and told me she > had sent a referral...well as it happens that referral got lost! So > she sent another and finally we got in to the plagiocephaly clinic.> > The doc was pretty good (wow the clinic was so busy! its amaising > how many bubs have this condition) and referred our son to get a > helmet fitted. As my son was about 9 months old at the time the doc > was a bit reluctant as he was over that 8 month mark (apparently his > head growth had slowed right down by 9 mths). We got the helmet > made, but our son only ended up wearing it for 2 to 3 months, but it > was pretty amaising how much it improved in a short time. I have > noticed since he has been walking (a late starter at 14 mths) that > its looking heaps better! Its amaising how so many ppl dont know > about the treatment available. Phew sorry that was a bit long, but > thats our story.> > Oh and just for the record, I live in Brisbane Australia.> > Regards,> > Jords Mama.For more plagio info

[Guest guest]

Hi ,

he doesnt really understand whats going on, just he has to be a little more gentle when he goes to pounce on me! lol (ya know how boys can be) I said to him the other day Mummy is going to have another baby, and how he will be big brother, and did he like that idea. He gave the big nod (the latest form of communication if he likes something lol), its really cute. I am going to make up a t-shirt for him (i read this idea on the internet a few weeks ago, so I dont take the credit for the awesome idea) on the front have "big brother club" and on the back "member since August 2004".

we lost a baby in April at approx 12.5 weeks gestation, so am just getting excited about things as I will be 13 weeks pg on Monday. The last pg was not right...from the very start, I didnt know I was even pg til about 10 weeks, and even those dates are a bit hairy. So we are more positive this time round.

Dh and I are big spoil sports and will be finding out the gender of baby #2, our 18 week u/s is on 20 December.

Am blown away by the high degree of email from this list...downloaded my emails and it said 140! I couldnt believe it...thought I had lots of spam (blah!) come thru...but luckily I was wrong, so will try keep things short and sweet. If anyone wants to email me off the list my addy is cvhiggins@... would be lovely to hear from anyone.

Ronni

Mum to Jordan and baby #2.

PS. All the best for s band fitting next week.

Re: New Here.

Hi and welcome. Wow Jordan must be excited. Does he want a little brother or a little sister to play with. (((BIG HUGS!!!))) and congratulations.mom to S., in CA-(casted for a DOCband 11/4 and should be banded 11/18/04)