RE: Has anyone heard of.....

April 12, 2011

EDS is a genetic connective-tissue " thing " , with many different

manifestations - I've been diagnosed as what used to be called " Type I " , and

is now " classic " (hah!) since childhood, as was my mother, and hers.

Relatively mild for us - hypermobility, fragile skin, lack of clotting

factor the most noticeable. Before the onset of arthritis, I could touch my

thumbs to my wrists front and back, my elbows and knees bent backwards.

I'll old and fat and MSed up now, but I can still put the palms of my hands

on the floor while standing straight-legged...

Manifestations of EDS range from me (the main danger to me is bleeding

to death) up to Marfans Syndrome, which is extremely dangerous, with lots of

weirdnesses in between. It's not unusual you've never heard of it - one big

reason I've avaoided doctors as much as I have is that every time they hear

" EDS " , I suddenly become a " teaching tool " !

www.ednf.org is the national organization; googling " ehlers-danlos " will get

you a couple of days worth of reading!

Happy Hunting!

in WY

Practical Blackwork Designs

http://practicalblackwork.com

http://practical-blackwork.blogspot.com

" You get a wonderful view from the point of no return... "

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

April 12, 2011

Thanks ,I bookmarked the page, and will be reading.. So far, it seems, I've only got the bendy twisty joints.. and when I was younger, if I could have only stretched about an inch more, I could have been that circus contortionist.. I haven't ever noticed any of the other symptoms I read about, and I haven't have a clotting issue that I know of, unless clotting had something to do with the Fibula above my ankle not healing , when it was broken (along with the two or three other bones in the actual ankle joint) -- Why couldn't I have had the double-jointedness then?.. but then again, maybe I did and that prevented a more severe mess than it was already -- You haven't been in to see a neurologist have you? Brain-warts just seems to prevent me from pulling up the memory.. I'm pretty sure you were waiting to hear from the VA concerning a neuro, and think I read that you had finally gotten approval or placed on a list, or something along that order.. But I don't remember if you've seen one or not... If you did see one, did you mention the EDS to him/her?I'm pretty sure that I'm going to need to call my neurology nurse and find out if it's an important thing for Doc to know when he's prescribing and such.. I don't want to be a teaching tool though.. but I might not really have a choice, because my neurologist is part of a "teaching hospital".. Guess it won't hurt to be his guinea pig for a bit.. Heck maybe they'll learn something.. I wish you luck with all the things that could go on with the EDS.. and then with the MonSter jumping in the middle.. you've got way way more than Multiple Surprises on your hands girl!!.. I tip my hat to you for all that you've accomplished [i can't even decided what colors to make a simple rainbow] and the blackwork that you produce.. all I can say is WOW!!!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 changecoming. One leaving another old character returning, and they would overlapeach 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 EhlersDanlos Syndrome. I picked up on the Ehlers (but thought it was Ailers) and Syndrome, somehowmissed the entire Danlos part..So, since I've never heard of this particular Syndrome or disease (guess I'mfinding out that there's a whole lot out there that I'm not aware of, sinceI've quit reading medical books, magazines, journals or anything else Icould get my hands on, for fun -- yeah.. when other people in my family tooknewspapers or magazines to the bathroom for reading purposes.. I took thegood old "Family Medical Book" or an Encyclopedia with me instead)So I Googled Ailers Syndrome, and was quickly corrected with Ehlers DanlosSyndrome.. and decided to go to Wikipedia instead of the actual sitededicated 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 lookingat the bent thumb.. and saying to myself.. Hey.. I can do that!.. thenlooked at the bent backwards fingers.. and tried that.. and hmm.. yeah Iremember doing that kind of thing when I was a kid.. and actually it wouldhave 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 Ididn't cry or even ouch.. well.. it didn't hurt!.. then I looked at theknee, 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 myjoints and nobody else could.. And HERE I thought I was special, beingdouble jointed and all.. And my handspread (width between pinkie & thumbwhen 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, ormy Neurologist.. or.. well definitely somebody about this one.. Readingthrough the Classifications, lower on the page.. I only seem to fit thefirst one in the list.. Type 3.. Hypermobility..Has me also wondering if some of the damage that seems to have been a resultof 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 fingerand other pictorial representations on Wiki?Guess I'm also going to be doing some research on hypermobility related tothe MonSter as well...HUGS|)onna------------------------------------

April 12, 2011

Still trying to get into the VA, good thing I ain't dying of anything

(that I know of!). Right now I'm amazingly healthy considering the EDS,

PCOS, COPD,Reynaud's, OCD, and possible (the only one not officially DXed)

MS - once a Dr gets hold of me, I'll probably be one foot in the grave!

And I think they have testing now for EDS - you CAN just be

double-jointed without the actual disorder. It's better to know one way or

the other, since it can affect treatment for other things, and it's a

recessive gene disorder so your children can have it or pass it on. Be sure

and mention it at your next Dr's visit, if nothing else it will give them a

whole new area of interest to explore... :-D

T

in WY

Practical Blackwork Designs

http://practicalblackwork.com

http://practical-blackwork.blogspot.com

" You get a wonderful view from the point of no return... "

Re: Has anyone heard of.....

Thanks ,

I bookmarked the page, and will be reading.. So far, it seems, I've only got

the bendy twisty joints.. and when I was younger, if I could have only

stretched about an inch more, I could have been that circus contortionist..

I haven't ever noticed any of the other symptoms I read about, and I haven't

have a clotting issue that I know of, unless clotting had something to do

with the Fibula above my ankle not healing , when it was broken (along with

the two or three other bones in the actual ankle joint) -- Why couldn't I

have had the double-jointedness then?.. but then again, maybe I did and that

prevented a more severe mess than it was already --

You haven't been in to see a neurologist have you? Brain-warts just seems

to prevent me from pulling up the memory.. I'm pretty sure you were waiting

to hear from the VA concerning a neuro, and think I read that you had

finally gotten approval or placed on a list, or something along that order..

But I don't remember if you've seen one or not... If you did see one, did

you mention the EDS to him/her?

I'm pretty sure that I'm going to need to call my neurology nurse and find

out if it's an important thing for Doc to know when he's prescribing and

such.. I don't want to be a teaching tool though.. but I might not really

have a choice, because my neurologist is part of a " teaching hospital " ..

Guess it won't hurt to be his guinea pig for a bit.. Heck maybe they'll

learn something..

I wish you luck with all the things that could go on with the EDS.. and then

with the MonSter jumping in the middle.. you've got way way more than

Multiple Surprises on your hands girl!!.. I tip my hat to you for all that

you've accomplished [i can't even decided what colors to make a simple

rainbow] and the blackwork that you produce.. all I can say is WOW!!!