Re: X linked

[Guest guest]

Hi Gretchen,

I don' t know if they need anyone for their project but I will ask him what

exactly

they research for. In March I have written a report for him because they had a

so-called brain-fair in the end of march and he needed reports of people with

cmt. He

found out that even among researchers cmt is not well known.

As I said before I will ask him about his project. I will have more contact to

him

because he aked me if I want to start a cmt-group for Germany and he will be my

medical

advisor. I ordered the domain www.hmsn.de (and got it!) and soon I will start to

look

for the right information material. I have got some material from cmt

international but

I will have to translate it. I have planned to have a chat on the site and

perhaps this

would be interesting for the list. But this will take a few weeks because at the

moment

I haven' t so much time (work etc.). But as soon as the site is on the internet

I will

tell you.

Bye,

Gretchen Glick schrieb:

> Hi , extremely interesting about X disiguising itself. Also very

> interesting about the MS diagnosis and how that might be CMT X-linked.

> Also interesting about the nerve biopsy for Type 2 and the genetic

> testing showing it is Type X. I had a nerve and muscle biopsy when I was

> 14 (done in 2 places on my left leg). At that time I was being

> rediagnosed - the research doctors thought I had MS. However, the

> biopsies showed I didn't. I recently read somewhere that some diseases

> inherited actually jump around on the chromosomes, which is going to

> create some possible confusion when the genetic code is mapped. I can't

> remember where I read this information unfortunately. Genetic testing

> still has a long way to go. Research too. This is very interesting news

> you shared from Zurich. This is exactly why this list exists, to share

> information and research news and find out what is being done in other

> countries. Does your Zurich researcher need anyone for his/her project?

> I'd like to sign up. Keep us informed! I have suspected for awhile that

> I have X, but have never been tested for it.

>

> Gretchen

>

> Theyskens wrote:

> >

> > My latest Information about genetic testing is as follows:

> >

> > Type x (as I have) disguises itself so that the genetic test is not

definite.

> > Research scientists assume that a lot of people diagnosed with Multiple

Sklerosis

> > in reality have cmt type x.

> > Also through nerve biopsy type 2 is diagnosed but genetic testing shows it

is

> > type x. That is why genetic testing should be done. I have got these

information

> > from my genetic researcher who now is researching cmt (and only cmt) at the

> > university of Zuerich, Switzerland.

> >

> > Bye,

> >

>

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