Tests For Eds Before Official Diagnosis

[martiz]

Hello,

Recently, had a full workup by Dr. Suleman in Dallas and he diagnosed me with EDS.

I have an appt to see Dr. Dhar in Houston (where I am from). Her office gave me a hard time about setting the appt - "have I had the testing done"? But I haven't had any testing - Dr. S. gave me the diagnosis based on a physical examination.

What tests should I have done before meeting with Dr. Dhar (in July)? Last thing I want to happen is to wait until July, then her office says I need a referral or need other testing then I have to wait even longer until those requirements are met.

Sorry if I already posted this. Brain fog.

Thanks,

Martii

[Chaos]

The only test I'm aware of is the Beighton score. You can google it for more info but it's just a physical exam. Sounds like Dr S already did that part. There are only genetic tests for the classical and vascular types of EDS that I know of. There is no genetic test for the hyper mobility type that a lot of us have.

If you google Joint Hypermobility Syndrome, there is a list of "major" criteria and minor criteria for diagnosis. (Most docs now think that EDS type III is the same as JHS but until there is a genetic test for either they won't know for sure.) Anyway, it's still all pretty much diagnosed based on history and physical exam.

[martiz]

Thanks, Yes - Dr. S. did already do that part.

I will wait until we closer to the date as he will have to send a referral letter.

Not sure what she was talking about.

Marti

[anna]

There are some very very expensive genetic testing for Classical EDS and Vascular EDS and some other types but no biological test for Hypermobile EDS as of this time. Do you think they may have been wanting to rule out other disorders!? In the UK most rheumatologists want you to have your ANA's done to rule out RA and such like.

[martiz]

Hi Anna,

I have had those and they came back negative - RA and Lupus.

I will call the office back in a few weeks and see If I can talk to a nurse or find out what testing they want me to have first.

I think you may be right - they want to save the appts for those who they know have EDS and she's the confirmation.

Those have not been done recently. Maybe I can get those results ready in case they need them. Good thought. Thanks!

[Darlene]

Can a person have EDS without being flexible?

[anna]

Martiz,

It is so frustrating when each practice works differently but seem to think we know what they want of us.

northerndarlene,

"Can a person have EDS without being flexible? "

You could have EDS and not think you are flexible! you could have mild flexibility not like the text book EDS pictures one sees on line. It is possible to have been flexible and have lost this with age and wear and tear.

I note you have Fibro, TOS, CFS, disc issues and migraines all these conditions have been linked with EDS and Joint Hypermobility Syndrome so it might be worth looking into EDS as a possibility.