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

[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