Re: Has anyone heard of...../ Ehlers Danlos Syndrome

[Guest guest]

No, but I have a cousin who has Ehlers Danlos Syndrome,and she and her joints do just what you describe!Love to you, Donna, and to all who have more than one"Medical Surprise" in your lives, as do I,nTo: MSersLife <mserslife >Sent: Tue, April 12, 2011 11:42:10 AMSubject: Has anyone heard of.....

Last night I was watching the episode of "House" titled "The Dig".Was a good one to watch, read up on it, and knew there is a cast change coming. One leaving another old character returning, and they would overlap each other in at least one episode, if I remember correctly. I love House! (and Hugh Laurie ain't cow fodder either)At the end of the episode, they finally have a diagnosis.. It's Ehlers Danlos Syndrome. I picked up on the Ehlers (but thought it was Ailers) and Syndrome, somehow missed the entire Danlos part..So, since I've never heard of this particular Syndrome or disease (guess I'm finding out that there's a whole lot out there that I'm not aware of, since I've quit reading medical books, magazines, journals or anything else I could get my hands on, for fun -- yeah.. when other people in my family took newspapers or

magazines to the bathroom for reading purposes.. I took the good old "Family Medical Book" or an Encyclopedia with me instead)So I Googled Ailers Syndrome, and was quickly corrected with Ehlers Danlos Syndrome.. and decided to go to Wikipedia instead of the actual site dedicated to the syndrome.. Wiki article here: http://en.wikipedia.org/wiki/Ehlers%E2%80%93Danlos_syndromeAnd there I noticed these little graphics at the top right.. and I'm looking at the bent thumb.. and saying to myself.. Hey.. I can do that!.. then looked at the bent backwards fingers.. and tried that.. and hmm.. yeah I remember doing that kind of thing when I was a kid.. and actually it would have been something my older brother would do to abuse and torment me, specially if I'd touched his records or stereo.. and he was surprised when I didn't cry or even

ouch.. well.. it didn't hurt!.. then I looked at the knee, and said.. WHOA Nellie!... I can do that, and whole bunch of the time, my knee would do that on it's own as well.. When I was a kid, it was cool that I could do those types of things with my joints and nobody else could.. And HERE I thought I was special, being double jointed and all.. And my handspread (width between pinkie & thumb when splayed out wide) was always larger than the boys.. and even most men.. even if only a quarter inch wider... Guess maybe I'll be asking my PCP, or my Neurologist.. or.. well definitely somebody about this one.. Reading through the Classifications, lower on the page.. I only seem to fit the first one in the list.. Type 3.. Hypermobility..Has me also wondering if some of the damage that seems to have been a result of the MonSter, might not be all his fault after all.. But I'm curious.. is there anybody else in the group that can do the

finger and other pictorial representations on Wiki?Guess I'm also going to be doing some research on hypermobility related to the MonSter as well...HUGS|)onna

[Guest guest]

n,

Thanks for your reply. I'm just amazed at the abundance of information available

these days. 11 years ago, when I was diagnosed, there was a lot, more than I

cared to continue to absorb.. then... and it's going to take months if not years

to to find my way through all that has been added since that time. If only my

brain were still the file cabinet that it was all those years ago.

I found an article in some MS Journal (and didn't save the link, of course) that

looks as if there might be some connection between EDS and MS, though the

abstract doesn't give enough detail to understand if this was supposition of the

writer and if the author's theory had been proved or disproved. The abstract

(http://www.ncbi.nlm.nih.gov/pubmed/18208891) states that EDS has various

neurological manifestations and that some study the author(s) performed shows

that there is an 10 to 11% increased prevalence of EDS in MS patients..

I'm going to continue to see if I can't find this article in full someway other

than paying $32 for the day to read it. If that fails, I just might call my

neurology nurse and ask her what she might or might not know about this, and if

it's something that I definitely want to remember to ask Dr. about on

my next visit.

Hmmmm.. so much to explore,and so very little brain functioning time with which

to retain all that I've read...

I used to have a keychain, and the little imprinted dangling thing said.. " Of

all the things I've lost..... I miss my mind the most " ... And I thought that was

true when I was raising the boys.. Darn.. if I'd have known that it was going to

get worse with age.. I'd have quit having birthdays years and years and years

ago..

I'm thinking that would make a great tagline, and would fit me oh so

perfectly...

HUGS

|)onna

Has anyone heard of.....

Last night I was watching the episode of " House " titled " The Dig " .

Was a good one to watch, read up on it, and knew there is a cast change coming.

One leaving another old character returning, and they would overlap each other

in at least one episode, if I remember correctly.

I love House! (and Hugh Laurie ain't cow fodder either)

At the end of the episode, they finally have a diagnosis.. It's Ehlers Danlos

Syndrome.

I picked up on the Ehlers (but thought it was Ailers) and Syndrome, somehow

missed the entire Danlos part..

So, since I've never heard of this particular Syndrome or disease (guess I'm

finding out that there's a whole lot out there that I'm not aware of, since I've

quit reading medical books, magazines, journals or anything else I could get my

hands on, for fun -- yeah.. when other people in my family took newspapers or

magazines to the bathroom for reading purposes.. I took the good old " Family

Medical Book " or an Encyclopedia with me instead)

So I Googled Ailers Syndrome, and was quickly corrected with Ehlers Danlos

Syndrome.. and decided to go to Wikipedia instead of the actual site dedicated

to the syndrome..

Wiki article here: http://en.wikipedia.org/wiki/Ehlers%E2%80%93Danlos_syndrome

And there I noticed these little graphics at the top right.. and I'm looking at

the bent thumb.. and saying to myself.. Hey.. I can do that!.. then looked at

the bent backwards fingers.. and tried that.. and hmm.. yeah I remember doing

that kind of thing when I was a kid.. and actually it would have been something

my older brother would do to abuse and torment me, specially if I'd touched his

records or stereo.. and he was surprised when I didn't cry or even ouch.. well..

it didn't hurt!.. then I looked at the knee, and said.. WHOA Nellie!... I can do

that, and whole bunch of the time, my knee would do that on it's own as well..

When I was a kid, it was cool that I could do those types of things with my

joints and nobody else could.. And HERE I thought I was special, being double

jointed and all.. And my handspread (width between pinkie & thumb when splayed

out wide) was always larger than the boys.. and even most men.. even if only a

quarter inch wider... Guess maybe I'll be asking my PCP, or my Neurologist..

or.. well definitely somebody about this one.. Reading through the

Classifications, lower on the page.. I only seem to fit the first one in the

list.. Type 3.. Hypermobility..

Has me also wondering if some of the damage that seems to have been a result of

the MonSter, might not be all his fault after all..

But I'm curious.. is there anybody else in the group that can do the finger and

other pictorial representations on Wiki?

Guess I'm also going to be doing some research on hypermobility related to the

MonSter as well...

HUGS

|)onna