Re: Ok, a few questions please......

July 15, 2004

Hi Grace,

Well, aneurysms can behave one of two ways, regardless of EDS they can

either grow slowly, or rapidly appear and burst, it depends upon the region

it's located and other factors as well. What makes the situation different

for some with EDS, is how devastating the result is, and the fact that it

can happen at any age, at any time.

The tests for this is a CT scan, this is diagnostic, it can be done with

dye, or without, the dye gives a better picture but without dye is

diagnostic as well not all people can tolerate the dye. There are other

tests as well, but this one is the most common and easy to perform and

tolerate.

If you have back pain and your leg wants to collapse, I'd go and see someone

about this sooner than later it could be a simple case of sciatic nerve

issues (you mention you have scoliosis, so that too could cause your leg and

back pain)or something bigger, so it's worth checking out, especially with a

history of EDS in the family and your fathers history as well.

Jill

Ok, a few questions please......

> I am so nervous it's unreal. Today my back feels worse. It not only

> hurts even taking Darvacet (sorry for spelling errors) but the

> creepy crawlers I feel are worse today, plus my right leg doesn't

> seem to be working right. It's weaker today and wants to collaps.

> I'm still waiting to hear from the Spec in Pitts if they want to

> risk doing that test. I wish I could remember what it was....lol

> The questions I have are: What symptoms do you all have and what

> tests need to be done? My dad had 3 aurisms in his head, but the

> one that killed him was in his abdomin. What tests do I need to have

> to be checked out???? Plus, do Anurisms in EDS patients just

> appear? Or do anurisms take awhile to grow? This is what I thought

> my whole life untill yesterday. I hear that sometimes they get

> larger and then other days it can be smaller almost undetectable. Is

> this true? Here are my symptoms:

>

> Atheritis in back and ankles.

> Bruse easily

> cuts take longer to heal (still recovering from knee surgery from

> last year)

> Very flexable

> I don't have the elastic skin

> Mild Sculliosis

> Family hystory of ruptured anurisms

> Bad joints

> I bled real bad with my last 2 children

> My vains are real easy to see threw my skin

> I also have at least 6 huriated disks and this hole in my spine

>

> I know these aren't bad probably compaired to what some of you are

> going threw. I just want to know what everyone has and if we have

> any of this in common. I haven't been taking care of myself or

> listening to my body cause I've always been taking care of the kids

> first. But I know now I have to also get in tune with me so I can

> hopefully skick around to care for my kids in the future. Thanks for

> listening.

>

> HUGGLES

>

> To learn more about EDS, visit our website: http://www.ehlersdanlos.ca

>

July 15, 2004

Hi Jill,

On my back....It has been checked. I am still waiting from the Docs

to decide wether to do a test on me or not. I have a " hole " in my

spine cause the pain and maybe leg problems. They think this hole is

affecting the spinal cord too. I always had good days and bad days.

Now it seems to be mostly bad. THe pain doesn't want to go away.

HUGGLES

> Hi Grace,

>

> Well, aneurysms can behave one of two ways, regardless of EDS

they can

> either grow slowly, or rapidly appear and burst, it depends upon

the region

> it's located and other factors as well. What makes the situation

different

> for some with EDS, is how devastating the result is, and the fact

that it

> can happen at any age, at any time.

> The tests for this is a CT scan, this is diagnostic, it can be

done with

> dye, or without, the dye gives a better picture but without dye is

> diagnostic as well not all people can tolerate the dye. There

are other

> tests as well, but this one is the most common and easy to perform

and

> tolerate.

>

> If you have back pain and your leg wants to collapse, I'd go and

see someone

> about this sooner than later it could be a simple case of sciatic

nerve

> issues (you mention you have scoliosis, so that too could cause

your leg and

> back pain)or something bigger, so it's worth checking out,

especially with a

> history of EDS in the family and your fathers history as well.

>

> Jill

>

July 15, 2004

Well Grace, the thing to do is to call the doctor and explain that the whole

picture is much worse, and get them to do something in the interim for you.

I can see that they would not want to inject dye into the area to determine

what's happening with fragility associated with EDS, but a CT can be done

without dye.

Get on 'em girl!

Jill

Re: Ok, a few questions please......

> Hi Jill,

>

> On my back....It has been checked. I am still waiting from the Docs

> to decide wether to do a test on me or not. I have a " hole " in my

> spine cause the pain and maybe leg problems. They think this hole is

> affecting the spinal cord too. I always had good days and bad days.

> Now it seems to be mostly bad. THe pain doesn't want to go away.

July 15, 2004

Well Grace, the thing to do is to call the doctor and explain that the whole

picture is much worse, and get them to do something in the interim for you.

I can see that they would not want to inject dye into the area to determine

what's happening with fragility associated with EDS, but a CT can be done

without dye.

Get on 'em girl!

Jill

Re: Ok, a few questions please......

> Hi Jill,

>

> On my back....It has been checked. I am still waiting from the Docs

> to decide wether to do a test on me or not. I have a " hole " in my

> spine cause the pain and maybe leg problems. They think this hole is

> affecting the spinal cord too. I always had good days and bad days.

> Now it seems to be mostly bad. THe pain doesn't want to go away.

July 15, 2004

Well Grace, the thing to do is to call the doctor and explain that the whole

picture is much worse, and get them to do something in the interim for you.

I can see that they would not want to inject dye into the area to determine

what's happening with fragility associated with EDS, but a CT can be done

without dye.

Get on 'em girl!

Jill

Re: Ok, a few questions please......

> Hi Jill,

>

> On my back....It has been checked. I am still waiting from the Docs

> to decide wether to do a test on me or not. I have a " hole " in my

> spine cause the pain and maybe leg problems. They think this hole is

> affecting the spinal cord too. I always had good days and bad days.

> Now it seems to be mostly bad. THe pain doesn't want to go away.

July 16, 2004

Grace,

Have you been checked for VEDS ??? the vascular form of EDS??? this

is the most common form of EDS that has anurysms (sp?)as a symptom,

the other forms particularly CEDS and HEDS (the classic and

Hypermobile forms) are the most common forms to EDS (or sis thought)

but VEDS (the vascular form) should be ruled out epecially with your

family history.

Then you can have thetests to keep a check ont hings (with your

family history even if it isn't VEDS it is probably a good idea to

have the tests regularly (like the abdominal and aortic CT's and

echocardiograms frequenty).

This hole in you spine is it like a spina bifida thing or is it

thought to be something different??? and would increasing you folate

levels help?? as it is suggested to prgnant women to prevent spina

bifida (a neural tube defect)

Hope you are feeling little better soon.

Sharon (Shazinoz in Australia)