Re: I need your experience-To

September 30, 2001

,

I agree with . Your sister- in-law desperately needs to see a

neurologist who is familiar with CMT. The drug Dilantin is on the list of

No, No's because it is known to exacerbate CMT. Please know we are

remembering your family in our thoughts and prayers.

----- Original Message -----

From: <Mommy2Adam@...>

< >

Sent: Saturday, September 29, 2001 6:29 PM

Subject: Re: [] I need your experience

> In a message dated 9/29/2001 6:03:46 PM Pacific Daylight Time,

> JJSLP122@... writes:

>

> > The rehab doctor told me

> > today that the stroke couldn't possibly effect her CMT, but my

> > experience is that " we " (people who live with this) know more than

> > most doctors. Also, they have been giving her Dilantin since for the

> > past two weeks. I know that is on the " don't take " list.

> > Has anyone had any experience with either a stroke or dilantin making

> > CMT worse?

> > Thanks in advance for your help!

> >

> I am not a doctor but this is what I understand.

> The stroke can make the C'MT worse. The pregnancy can make the CMT worse.

> From what I understand anything that is on that CMT list of the don't take

> meds has made someone worse.

> Your family needs to get a neurologist that understands CMT ASAP.

>

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