Re: I'm Official! My 2 cents

[Guest guest]

I keep reading on this board about people who have been diagnosed

with a particular type of EDS with symptoms from other types of EDS.

This isn't an unusual diagnosis - there are just too many times that

it has happened for it to be unusual.

I've come to believe - just from looking at this board and my own

family - that EDS typing is not as cut and dried as the medical

profession is trying to make it. I think we all still have a lot to

learn! That is to say - just because you fit the hypermobility

criteria, doesn't mean that you don't have symtoms that fit other

types. Perhaps the criteria needs an overhaul? Something to think

about.

Without going into a whole history my family for 5 generations (11

people) have a wide scattering of symptoms and to different degrees.

I know that we have (amoung other things) hypermobility, sensitive

skin, fleshy blobs under the skin, easy bruising, varicose veins,

mitral valve prolapse, blood pressure problems, peridonatal problems,

etc. From what I have been able to determine all those things are

indicated as part of the Classical type - but who really knows. I

know I still have a lot to learn about EDS, but from what I've read

there only VEDS can be clinically diagnosed (skin plug test)- the

rest are subjective. Someone please correct me if I'm wrong.

I'm personally starting to investigate POTS and mitral valve prolapse

syndrome since I believe they relate to me and some members of my

family. I have some theories - but still need to do some

investigation. I haven't found any info on POTS relating to EDS yet,

except on this board - but I wonder how much the medical community

has investigated the connection.

I don't think we should think ourselves - or allow the medical

community to think - that based on the diagnosis we are a particular

way. EDS appears to be incredibly diverse and therefore - each

person needs to be treated based on their person sypmtoms and

characteristics - rather than treating the diagnosis. We must

continue to educate the entire population and esp the medical

community that treats us. The cookie cutter mentality doesn't work

because we aren't cookies.

>

> I'm Official!

>

>

> Well, I saw the geneticist yesterday and I am now an official

EDSer.

> He diagnosed me with the hypermobile type (no big surprise there,

at

> least to me).

>

> I was slightly dismayed when I told him that I had some concerns

> about the possibility of having the vascular form due to a

diagnosis

> of vasodepressor syncope, mitral valve prolapse, easy bruising,

thin

> skin, etc. (along with a maternal-side family history of varicose

> veins,

>

> ~~~~~~~

> - welcome to the official club....a dubious honor, for

sure...

> I have all the above but not sure on the vasodepressor syncope. I

have a meeting with an electrophysiologist tomorrow morning about my

possibly having POTS.

>

> I have a Variant of EDS - not a true anything but I have

symptoms from several categories of EDS.

>

>

>

>

[Guest guest]

Hear Hear! Well said, !

I think I've decided that the next time I need surgery, I'll ask them

to take all the precautions they'd take for someone with VEDS. I'll

remind the doctors that they can't assume I've been typed correctly

(unless of course, they want to do the skin biopsy at some time in

the future).

PS. I also believe there is a POTS connection (OI connection at the

very least) and the next time I see my cardio, I am going to ask to

look at the results of my tilt test to see if I might have POTS in

addition to vasodepresson syncope (which, from what I understand is

just another name for neurocardiogenic syncope or NCS, but I'm not

totally clear on that either). My original cardio retired, so now I

see someone different in the office (only once a year for checkups),

so I don't think I'll have to worry about offending him if I ask for

a clarification of my diagnosis.

>

> I don't think we should think ourselves - or allow the medical

> community to think - that based on the diagnosis we are a

particular

> way. EDS appears to be incredibly diverse and therefore - each

> person needs to be treated based on their person sypmtoms and

> characteristics - rather than treating the diagnosis. We must

> continue to educate the entire population and esp the medical

> community that treats us. The cookie cutter mentality doesn't work

> because we aren't cookies.

>

>

>

[Guest guest]

> I'm personally starting to investigate POTS and mitral valve

prolapse

> syndrome since I believe they relate to me and some members of my

> family. I have some theories - but still need to do some

> investigation. I haven't found any info on POTS relating to EDS

yet,

> except on this board

, someone has investigated this...take a look at this article:

http://potsplace.com/what_causes_pots.htm

Love Lana

[Guest guest]

Also, these articles: http://www.hcs.gr/Keimena/4_2002/sel%2047-52.pdf

http://www.potsplace.com/research.htm

Love Lana

[Guest guest]

Also, these articles: http://www.hcs.gr/Keimena/4_2002/sel%2047-52.pdf

http://www.potsplace.com/research.htm

Love Lana

[Guest guest]

I think a big part of it is the overwhelming amount of accumulated medical

knowledge that makes it impossible for any one doctor to know it all and an

abundance of outdated information still available when doctors research EDS.

There's more to it than that too, but I just had an econ midterm tonight and

my brain is mush so I can't get my thoughts more together than that.

-Barb

Isoquant. What's an isoquant?