Re: I'm new and could really use some help.

[Guest guest]

Grace,

Welcome! Your family history is a sad one, I am so sorry for all of your

losses.

When you mention tests done by the geneticist, did that actually include a

skin biopsy that was sent to another lab?

Jill

[Guest guest]

Grace,

Welcome! Your family history is a sad one, I am so sorry for all of your

losses.

When you mention tests done by the geneticist, did that actually include a

skin biopsy that was sent to another lab?

Jill

[Guest guest]

Grace

Welcome to the list. My name is Betty and I am 46. I was diagnosed with

Vascular EDS or VEDS in November 2003. I only found out about this after my

13 year old son passed away from a ruptured aorta. I was then tested through

a skin biopsy (and sent to Seattle to Dr. Byers) which was confirmed that I

have the gene mutation as well as my son who passed away. We recently got

the results back for my older son who is negative (thank fully). I am not

sure about other forms of EDS but as far as I know to confirm or deny VEDS a

skin biopsy is needed. Where do you live?? I live in Calgary, Alberta

Canada. Are you waiting that long to be tested for a reason?? Some people

want to know and others don't. One thing I learned from this list is that

" knwledge is power " If you know what you have then you can make educated

decisions about your health care. I hope some of this helps and please don't

hesitate to ask questions. Thats what we are here for. There is a

conference (EDS) going on in Buffalo this week so many of our members are

attending that so some may not be online. But when they return they are

wonderful to talk to and have wealth of information.

Take care

Betty

I'm new and could really use some help.

> To get the whole story I have to start from my dad's death. After he

> died from a ruptured anurism, my mom was told by the docs they this

> he had EDS. We then found out that my grandmother also died from

> this as well as 2 other family members. The docs told my mom to have

> us kids checked every 5 years for EDS. Well it was never done. When

> I got married the first time I was very young. My mom told me that

> we have to be checked for EDS every 5 years. No big deal. We where

> never told why. Now that I am married again and now have 4 boys, our

> youngest has alot of health issues. One of these issues is an

> enlarged aorta. So off to Genetics to find out what might be

> causeing all these problems. She asks for family history. Husbands

> side is ok. She then gets to my side. I tell her about my father and

> grandmother and two uncles dieing from Anurisms. She tells me about

> EDS and told her that my mom was told we had to be tested but we

> never have. What's the big deal. Well now I know what the big deal

> is. UGH....We where told by genetics that they don't know what type

> of eds we have. They did the tests they could and they came back

> fine. But she is possitive this is what we have. My oldest son and I

> will be tested with in the next 6 months to a year. Because of not

> knowing what kind we have makes things very difficult. I know not

> everyone knows the types they are. Right now I am having tests done

> for my back. I have always had weak joints. Broke my ankles lots

> when I was growing up. Couldn't do gym very often. The tests they

> are trying to do for my back might kill me because I'm highly

> allergic to iodine. But it seems my spine has a hole in it that's

> not supposted to be there and I wasn't born that way. It's gotten

> worse in the last 3 years. There isn't a day that goes by that I

> don't hurt. It's causeing problems with my legs as well. They said

> that this hole is where my pain is coming from and is probably

> caused by the EDS. Does anyone have something simular to this??? My

> family all died between the ages of 38-42 with anurisms. I'm very

> nervous cause I'm going to be 35 in 3 months. Any information would

> be great. Thank you for listening to this long winded message.

>

> HUGGLES

> Grace

>

>

>

>

>

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

>

[Guest guest]

Yes that was the test they did. They sent it to Washington State. They said that

is the only place they can do this test at. We waited over a month to get the

results.

Re: I'm new and could really use some help.

Grace,

Welcome! Your family history is a sad one, I am so sorry for all of your

losses.

When you mention tests done by the geneticist, did that actually include a

skin biopsy that was sent to another lab?

Jill

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

[Guest guest]

Hello Grace, welcome to the group. I am Cindy C from Michigan. Our family has

type 3. Pain is a big problem for most people with all types of EDS. Like Betty

said, Allot of us are going to the National EDS Convention in NY. I leave

tomorrow. You might want to think about looking into going next year. There are

many Drs. speakering on EDS there. There is a great deal of info here too. Take

some time and look around the files and info at the site. You'll find them in

the yellow box on the home page. Ask anything and many will try to help answer.

I don't have answers for the questions you asked this time, but maybe next time.

Getting your biopsy back in 4 weeks is very fast. Some wait 6 months and longer.

It depends on how fast the skin grows in the lab. The Nation Institute of Health

also does the Biopsy, but only for people that go there. Most all tests are sent

to Dr Byers lab in Washington. (Byers is one of the speakers at the convention)

Hope you get answers to all your questions. This group is wonderful and so full

of knowledge. Bye for now.

Cindylouwho

[Guest guest]

Hi Grace!

Welcome to the family! It's nice to meet you, but I wish it were

under better circumstances - I'm so sorry for the losses you've

endured as well as for your own pain.

I don't really have any answers for you, but regarding the hole in

your spine, I wondered if you had had a dexa scan that measures bone

density? Many of us have early osteopenia/osteoporosis so it may be

a good idea to get one done. Osteoarthritis is also an earlier onset

for EDSers.

I hope you receive the answers to the questions you posed and I wish

you and your family good wishes.

Love Lana

But she is possitive this is what we have. My oldest son and I

> will be tested with in the next 6 months to a year. Because of not

> knowing what kind we have makes things very difficult. I know not

> everyone knows the types they are. Right now I am having tests done

> for my back. I have always had weak joints. Broke my ankles lots

> when I was growing up. Couldn't do gym very often. The tests they

> are trying to do for my back might kill me because I'm highly

> allergic to iodine. But it seems my spine has a hole in it that's

> not supposted to be there and I wasn't born that way. It's gotten

> worse in the last 3 years. There isn't a day that goes by that I

> don't hurt. It's causeing problems with my legs as well. They said

> that this hole is where my pain is coming from and is probably

> caused by the EDS. Does anyone have something simular to this??? My

> family all died between the ages of 38-42 with anurisms. I'm very

> nervous cause I'm going to be 35 in 3 months. Any information would

> be great. Thank you for listening to this long winded message.

>

> HUGGLES

> Grace

[Guest guest]

I'm glad your other son doesn't have it as well. It's good to know that there is

a chance that not all the children get it. I just wish I was informed of how

serious this is when I was younger. It may have changed alot. As for where I

live? I live in Oil City, Pa. It's a small town. Not to far from the NY boarder.

About 3 to 4 hours if that. We are waiting to be tested cause we have to wait

for an opening. That's one thing about this area. No-one knows how to care for

REALLY sick people. So we wait for an opening in Pittsburgh. I'm not really

sure what type of EDS we have. I don't like, not knowing. All my youngest

Genetic doc told us was that the one test they did was negative, but it did show

a connective tissue disorder. And that she is very sure it's EDS. Especially

with my families history of Ruptured Aneurisms. I was hoping they would do more

tests to see if it was something else, but they are sure this is what it is. We

thought Marfans for awhile but they said it's not that. All I know is I'm

scared!

HUGGLES

Re: I'm new and could really use some help.

Grace

Welcome to the list. My name is Betty and I am 46. I was diagnosed with

Vascular EDS or VEDS in November 2003. I only found out about this after my

13 year old son passed away from a ruptured aorta. I was then tested through

a skin biopsy (and sent to Seattle to Dr. Byers) which was confirmed that I

have the gene mutation as well as my son who passed away. We recently got

the results back for my older son who is negative (thank fully). I am not

sure about other forms of EDS but as far as I know to confirm or deny VEDS a

skin biopsy is needed. Where do you live?? I live in Calgary, Alberta

Canada. Are you waiting that long to be tested for a reason?? Some people

want to know and others don't. One thing I learned from this list is that

" knwledge is power " If you know what you have then you can make educated

decisions about your health care. I hope some of this helps and please don't

hesitate to ask questions. Thats what we are here for. There is a

conference (EDS) going on in Buffalo this week so many of our members are

attending that so some may not be online. But when they return they are

wonderful to talk to and have wealth of information.

Take care

Betty

[Guest guest]

I'm glad your other son doesn't have it as well. It's good to know that there is

a chance that not all the children get it. I just wish I was informed of how

serious this is when I was younger. It may have changed alot. As for where I

live? I live in Oil City, Pa. It's a small town. Not to far from the NY boarder.

About 3 to 4 hours if that. We are waiting to be tested cause we have to wait

for an opening. That's one thing about this area. No-one knows how to care for

REALLY sick people. So we wait for an opening in Pittsburgh. I'm not really

sure what type of EDS we have. I don't like, not knowing. All my youngest

Genetic doc told us was that the one test they did was negative, but it did show

a connective tissue disorder. And that she is very sure it's EDS. Especially

with my families history of Ruptured Aneurisms. I was hoping they would do more

tests to see if it was something else, but they are sure this is what it is. We

thought Marfans for awhile but they said it's not that. All I know is I'm

scared!

HUGGLES

Re: I'm new and could really use some help.

Grace

Welcome to the list. My name is Betty and I am 46. I was diagnosed with

Vascular EDS or VEDS in November 2003. I only found out about this after my

13 year old son passed away from a ruptured aorta. I was then tested through

a skin biopsy (and sent to Seattle to Dr. Byers) which was confirmed that I

have the gene mutation as well as my son who passed away. We recently got

the results back for my older son who is negative (thank fully). I am not

sure about other forms of EDS but as far as I know to confirm or deny VEDS a

skin biopsy is needed. Where do you live?? I live in Calgary, Alberta

Canada. Are you waiting that long to be tested for a reason?? Some people

want to know and others don't. One thing I learned from this list is that

" knwledge is power " If you know what you have then you can make educated

decisions about your health care. I hope some of this helps and please don't

hesitate to ask questions. Thats what we are here for. There is a

conference (EDS) going on in Buffalo this week so many of our members are

attending that so some may not be online. But when they return they are

wonderful to talk to and have wealth of information.

Take care

Betty

[Guest guest]

Grace, the Dexa scan is just an instrument sort of like a MRI, but it

measures bone density. You lay on a table and the machine goes back

and forth over two different areas of your body - the spine and hip.

Most people don't even need to undress as long as you don't have any

metal zippers or such. It takes only 1/2 hour or so to complete the

test, but you usually need to get the results from your doctor that

requests the test.

In regards to the creepy feeling, I'm wondering if you could have

some nerve compression or a pinched nerve somewhere that is causing

that feeling. I would mention it to the doctor, especially where you

have less response in one leg. That may be what the nerve test you

mentioned will tell you.

Hope this helps!

Love Lana

> Thank you for the information. Not sure what this Dexa Scan is. Can

you let me know? They are wanting to do a few tests, but have to see

if the one will kill me or not. I am allergic to iodine and that is

what the test entitles.....UGH....lol One of the others is a nerve

test. Because I am having less response with my right leg then my

left. I have a question for anyone. Does anyone get the, " Creepy

Crawlers " going up their back??? It feels like something is crawling

up my back under the skin. It doesn't hurt, it's just very annoying.

It happens when I sit or stand for more then 10 minutes. Thanks again

Lana for the info.

>

> HUGGLES,

> Grace

>

> Re: I'm new and could really use some help.

>

>

> Hi Grace!

>

> Welcome to the family! It's nice to meet you, but I wish it were

> under better circumstances - I'm so sorry for the losses you've

> endured as well as for your own pain.

>

> I don't really have any answers for you, but regarding the hole

in

> your spine, I wondered if you had had a dexa scan that measures

bone

> density? Many of us have early osteopenia/osteoporosis so it may

be

> a good idea to get one done. Osteoarthritis is also an earlier

onset

> for EDSers.

>

> I hope you receive the answers to the questions you posed and I

wish

> you and your family good wishes.

>

> Love Lana

>

>

>

>

>

[Guest guest]

Dear Grace,

Welcome to the list :-)

I too am so sorry to hear of all the losses in your family. You state they

all passes away from anurisms - were these brain anurisms? If so I recently had

a test done called an MRA (not MRI but MRA) which may help put your own mind at

ease a bit. It is a scan of the arteries and vessels in your head and in my case

neck. It is done in an MRI machine, some pics without die and others with a dye

injected in your arm. Apparently not only could they possibly see an anurism

forming but can also see if flow is restricted anywhere. Just something you may

want to look in to.

As for the hole in your spine the only info I have to share would be a hole

I had in my ankle which showed up after a real nasty ankle give out. The doc

couldn't believe that it could have been caused by the sublux/dislocation and

could only come up with the possibility of a bone cyst that had been broken by

the jarring. Personally I believe when the ankle caved in on itself so violently

(I was stepping down off my fireplace hearth and all my weight was on that

ankle) the rounded ankle bone mashed into the lower bone taking a scoop out.

Maybe either something like this or even a bone cyst (which may or may not be

EDS related) is behind your spine hole.

Whatever the case I hope you can get it fixed up. Many of us live with

constant pain as well as nasty acute episodes that can rarely be pin pointed to

a specific cause. You have found a cause for one of your major pains and can

possibly get it repaired - that is in itself a good thing :-)

Your best friend now is research. Learn as much as you can about EDS and

how it affects you personally. This will involve getting in tune with your own

body to the point that most people aren't. This will help you help the docs and

in turn yourself.

Again welcome aboard!

Hugs,

B.

HEDS, New Jersey, USA

[Guest guest]

Hi Grace --

Welcome to the group!! My name is Patti and I was diagnosed with Vascular EDS

two years ago (at age 48) after I had some coronary arteries dissect and had

bypass surgery.

My diagnosis was done on a skin biopsy sent to Dr Byers at the University

of Washington. I am so sorry to read of all the people in your family who have

passed due to ruptured aneurysms - it is a very scary thing. I hope the doctors

can find out what is going on with your back and I hope your children are doing

well.

If there is anything I try and answer for you, just let me know. This is a

wonderful group to belong to and there are many people here who make everything

easier to deal with.

Again, welcome, and take care ----

Patti

I'm new and could really use some help.

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

[Guest guest]

Hi Grace --

Welcome to the group!! My name is Patti and I was diagnosed with Vascular EDS

two years ago (at age 48) after I had some coronary arteries dissect and had

bypass surgery.

My diagnosis was done on a skin biopsy sent to Dr Byers at the University

of Washington. I am so sorry to read of all the people in your family who have

passed due to ruptured aneurysms - it is a very scary thing. I hope the doctors

can find out what is going on with your back and I hope your children are doing

well.

If there is anything I try and answer for you, just let me know. This is a

wonderful group to belong to and there are many people here who make everything

easier to deal with.

Again, welcome, and take care ----

Patti

I'm new and could really use some help.

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