new member

[Guest guest]

Hello Everyone!

My name is D.L. and I'm sixteen years old. I have lived with an undiagnosed

illness for atleast the past five years. I have been to neurologists,

podiatrists, orthapedic surgeons, and rheumatologists. And they all seem to have

different ideas. They believe I could have CMT, Lupus, Friedrich's, or a

Vascular

Disease. Here's what's going on. Maybe some of you have opinions.

At first I just had pain in the feet. So, I went to a podiatrist. He said I

had high arches. I got orthotics and that was that. They didn't help. So I went

to another podiatrist who listened. He said I had and I quote, " a pes cavus

deformity involving the foot bilateral with neurological involvement. " This is

because at this point I had frequent numbness in my hands and feet. Along with

that also came fatigue in my hands, making it difficult and painful to write.

He believed I had Friedrich's, so he sent me to a neurologist.

The neurologist did an EMG. An said I had a bit of neuropathy in my legs and

that it would take longer for a neurological disease to show up in a test. And

for the pain in my hands I was sent to a rheumatologist. He did bloodwork and

discovered that I didn't have arthritis but, I did have high ANA. 660 when it

should have been 70. And he did nothing about it. He just dropped me as my

current doctor would say.

I have since found out that I am double jointed everywhere except my back

where I have arthritis. And when I had a third Emg it showed up as charpal

tunnel

in my wrists. And I have no reflexes in my feet. I have horrible balance and

my ankles give out on me constantly. This made my new Doc fear about me

breaking my ankles. So, I now wear braces. And what really bothers me lately is

that

I shake. Does anyone else have their hands shake all the time? Oh, and all

the pills they put me on over the years, have caused me to have stomach ulcers.

And my face gets really hot and red and swells up.

I like my new Doc (as he calls himself) a lot. He sat down and listened and

talked to me. He said he hopes I don't have CMT but thinks I might. Though

that's not first on his list of things to narrow out. First he thinks I have a

Vascular disease. But he also said I could have two things. My other doctors

have

never looked at that. So what do you all think? Thanks for listening.

D.L.