Welcome Angie

[Guest guest]

Thank you, and no vaccinations for younger child. I debated for a long time,

but I landed on following my instincts with him. Yep, I have the mercury

fillings, and I have terrible problems between that, the last round of vaccines

I got as a teenager, and then ever since they put titanium rods in me from a car

accident I have been terribly sick!

Thank you for the info on DDI. I will be doing that. I just wish that my

friend that is about to have a baby, would learn from my mistakes.

Thanks

Angie

[ ] Welcome Angie

Hi Angie,

Welcome. You're in the right place. The screaming after vaccines sounds like my

nephew. You've been through a lot as has your son. He should be eligible for

Early Intervention which serves birth to age 3. I presume you're not vaccinating

your younger child? Trust those mommy instincts they're usually right! Consider

doing a DDI (Doctor's Data, Inc.) hair elements test for your son, then apply

the counting rules or post here for help interpreting the results. You can order

the test without a doc through DLS (Direct Lab Services) and if you mention this

group they'll give you a discount. Do you have any mercury amalgam dental

fillings? Find a mercury-free dentist for your kids.

S S

Hi

Posted by: " angelphilli " angelphilli angelphilli

Fri Feb 29, 2008 4:00 pm (PST)

I wanted to introduce myself. My name is Angie and have two sons.

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[Guest guest]

Hi Angie and welcome to our network! Thanks for jumping in with your

introduction too. Sounds like you might benefit from some type of AFOs to help

in walking. We have tons of archived posts on AFOs, plus Files Links, plus we're

here to help each other, so let us know what you need.

Gretchen

[Guest guest]

Hi Angie and welcome. I was diagnosed almost the same way. Me feet went

totally numb one night when I had my feet crossed. I fell asleep that way on

the couch for 4 hours and when I woke up I could not walk for 2 days. Went to

the Dr, etc... finally got to a foot Dr. and she took one look at my feet and

referred me to my neurologist. She thought she knew for sure it was CMT. My

neurologist knew right away when he looked at my feet. Did the DNA test and

bam, CMT Type 1A.

I don't take anything for pain yet, but many do here and will chime in I am

sure.

Good luck,

Introduction - Angie Phiffer

I am a 30 year old mother of two boys ages 10 and 4. I have been having

problems for about 7 years walking. It wasn't horrible until about 4 years ago.

3 years ago I was diagnosed with Neuropathy but the doctors had no idea why and

I had other medical issues come up so my problems walking was put on the back

burner and never got moved to the front.

About a month and a half ago, my blood pressure shot up and my doctor made me

go to the ER. The neurologist who examined me looked at my feet and mentioned

CMT. I have no known family history of it but my grandparents died 25+ years ago

so I don't have a lot of family medical history. When I went for my follow-up,

the neurologists I saw did their tests and thought a genetic test was warranted

and an EMG. Both of them came back that i do have CMT.

I have a lot of problems walking. If I walk too far or too fast, my legs start

burning/cramping in my lower legs and then my lower legs and feet fall asleep

and I will fall over if I keep trying to walk and my ankles start twisting

because I can't feel them. It is starting to get hard to type sometimes which is

my job and I'm dreading that becoming difficult. I also have a lot of

neuropathic pain in my legs and arms. I don't know what to do for it, but I'm

hoping they can help me when I go for my appointment at the MDA clinic. Nice to

meet you all.

Angie Phiffer

[Guest guest]

Welcome Angie,

You're so young and already having these issues, my heart hurts for you. Just

try to pace yourself, don't waste energy on things others can do for you and be

picky about where you spend your energy. Consider a scooter or power chair for

excursions...malls, zoos, etc. You'll conserve energy. I had very late in life

presentation of symptoms, so I can't imagine what you're dealing with. Others

with early onset will surely be posting. Good luck with MDA, let us know how it

goes.

Jeanne in Houston