Hello Amanda,
To answer your question about doctor and the guessing game:
1/ get another doctor that you can trust.Keep looking until you find a
friendly one.
2/ yes the doctor play a guessing game. the first back doctor I saw said
I had neuropathy, I was sent to a neurologist who could not understand
why I had numbness in my feet and hands! That was at a large neuro
practise, there is no reason why he should have known that it was pn.

Read about COQ10, Alpha Lipoic Acid, L carnitine and find out if Alan
get them.
Also look into herbal medicine, such as Turmeric that you get in powder
at the grocery store.

I am only the patient.

Noel

On Wed, 01 Mar 2006 20:24:09 -0000 "amanda" <Amanda29al@...> writes:
> hi everyone,
>
> it has been a long time since i have posted, anyway, a quick run
> down. my son who is 6 has been diagnosed with peripheral
> neuropathy.he is not a diabetic, and as far as we know noone on
> either side of the family has ever had this. he has had alot of
> test done, the doctors say their is very little other test that may
>
> can be done. he has been checked for md, cp, cmt neuropathy. and
> alot
> of other things. we have seen all of the doctors here in mobile,
> alabama. we also took him to uab in birmingham, al. the test came
> back, and they were normal, the only test that they have done that
> has been not normal, is the nerve cond test, and the feeling test.
> he
> has lost all feeling in his fingers toes and someparts in his arms
> and legs.he also wears braces on his legs, we have some good days
> and
> alot of bad days. they say that those are the best braces he can
> get.every doctor we have taken him to says that alan has this
> neuropathy, but they do not know what form of neuropathy that he
> has.
> first it was cmt neuropathy then pn, than cmt again now it is back
> to
> pn. this is all very confusing. we dont know what to believe
> anymore.
> my sister and i have been trying to do some research online to
> figure
> out if maybe alan has something other than pn, but right now, we
> dont
> see anything.i guess my questions is is this normal for the doctors
>
> to be playing the guessing game with us, and is it possible for it
> to
> be something else other than pn? i just needed to let some stuff
> off
> my mind, sry this was so long...amanda in alabama
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> Yahoo! Groups Links
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