Re: How to change misleading CMT websites

[Guest guest]

,

I found all these references to CMT and pain below. So, when you

email websites that say " pain doesn't occur in CMT " , you can send

this list. I know it is hard to sort through all the CMT info on the

Internet, but there IS alot of garbage and untruths, and also if you

contacted an organization that employs non-CMT affected persons,

most likely the response will be " CMT doesn't cause pain " .

From the website

http://www.ninds.nih.gov/disorders/charcot_marie_tooth/charcot_marie_

tooth.htm

" Some patients experience pain, which can range from mild to severe. "

And this paper on CMT pain

http://www.charcot-marie-tooth.org/about_cmt/pain.php

And from

http://www.clevelandclinic.org/health/health-

info/docs/1200/1263.asp?index=6009 "

In addition, pain-killing drugs can be prescribed for patients who have severe

pain. "

And from

http://millercenter.uchicago.edu/learnaboutpn/typesofpn/hereditary/ch

arcotmarietooth.shtml

" Over-the-counter pain medication for mild pain; For severe pain, take

over-the-counter pain medication or prescription drugs used for peripheral

neuropathy, on a regular basis—rather than waiting until nighttime when symptoms

can become more severe

And from http://www.emedicine.com/pmr/topic29.htm

" Pain, both musculoskeletal and neuropathic types, may be present. "

I hope this helps, . I am lucky, I don't have pain anymore. Although back

in my teens I did, but it was the muscle contraction type pain, not nerve pain.

Exercise programs for the last 25 years seem to keep the pain away for me.

~ Gretchen

[Guest guest]

Some forms of CMT do not cause pain. I've had very little pain over the years,

I've had more pain from corrective surgery than CMT itself. Perhaps people are

writing about their own cases and extrapolating that experience to everyone

else.

Ed

[Guest guest]

Hello Gretchen!

As I have mentioned before, it really bothers me how misleading websites can

be, For example the site www.ninds.nih.gov that you mention said, " CMT is not

fatal and people with most forms of CMT have a normal life expectancy " . As we

know from my sister dying and others, and even for me too (unless I get hit by a

train or something) :-) CMT can be fatal. The site should say, " CMT can be

fatal, but people with most forms of CMT have a normal life expectancy " . When

I notified a site and asked why they didn't have the information correct they

said, " We don't want to alarm

people " . I think knowledge is power!

Kay

[Guest guest]

And then there is the whole issue of the " emotional pain " that comes

with CMT, which I have rarely seen mentioned in a few websites. I did find a

short few pages in Dr. Vinci's book about this, where he

suggested * more coverage of this is needed *. No kidding! And then this

abstract on Psychosocial issues that face patients with Charcot-Marie-Tooth

disease: the role of genetic counseling.

http://www.ncbi.nlm.nih.gov/sites/entrez?cmd=Retrieve & db=PubMed & list_uids=160470\

93 & dopt=Abstract

And I hear you Kay, yes CMT can be fatal in certain circumstances, and

instead of 'soft-pedaling' this, more attention should be brought to this

matter.

We must challenge CMT organizations to bring these needed topics into sharp

focus and include in their media releases.

~ Gretchen