Re: Familial Dysautonomia

[Guest guest]

Hi Aletta,

See:

http://www.med.nyu.edu/fd/fdcenter.html

http://dysautonomia.homestead.com/

If you don't have the hereditary form perhaps you have

one of the similar disorders.

Hugs,

Pam

--- nancymullen ds401@...> wrote:

> Hi. Just saw ur emaila dn quick response for now .

> have u looked at ndrf

> site for the disease u are speaking of below.

> http://www.ndrf.org/autonomic_disorders.htm

> nancy m.

>

> aletta mes wrote:

> >

> > Still hanging in, thanks for keeping me in your

> thoughts. It helps.

> > Still have not spoke to one doctor about my son

> (no time, they tell

> > me), maybe tomorrow. No movement anywhere (bowels

> incl. LOL). Keep

> > forgetting to eat and take meds, so used to meals

> and stuff being part

> > of the structure of being a mom. My mother isn't

> speaking to me (I

> > guess she quit taking meds). My sister's being

> sweet but with

> > full-time job and five kids and another on the

> way, can't expect much

> > time. My mother in law is very sweet and

> supportive (Naples FL), and

> > the X and I speak daily. Son's god-father called

> to. Unfortunately

> > they're on the other side of the continent.

> Coathanger pain galore

> > (to much time spent upright and unsupportive).

> >

> > Guess I chose the wrong time to quit smoking,

> huh?LOL

> >

> > Letters I emailed to Church etc. are slowly being

> responded to. But,

> > I still know very few details about what really

> happened. Hope to

> > speak to my parish priest tomorrow, he responded

> very quickly (as is

> > his nature), but I was at the hospital when he

> called. My friend

> > who lives upstairs came down last night

> and we chatted till

> > about 4 am or so.

> >

> > Anyone have any info on this: Inherited

> Dysautomania listed as a

> > 'Jewish " (Askenasi Jews in particular) disease,

> matches me in some

> > ways better than MSA (breech births - mine, my

> son's), swallowing

> > problems, childhood pneumonia (6 times before age

> 20) inability to

> > cry, (have been called insensitive all my life),

> some other things

> > which escape me right now. I'm a total mut with

> lots of 'bastards' on

> > both sides of the family (including Paiute, Maori,

> Flemish, Dutch,

> > Spanish). There is a genetic test for it, but

> they keep saying

> > 'Jewish' on these websites as though it is an

> absolute requirement.

> > In Vancouver we have no Jewish hospital (my kids

> were both born at Mt.

> > Sinai in Toronto). Not that there is a cure, but

> it has been

> > identified as a genetic defect.

> >

> > aletta mes, vancouver, bc canada

> > http://www.aletta.0catch.com

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> >