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Eds Testing?


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How do they determine you have EDS? I only ask so I can rule this out. My family DR said I dont have a connective tissue disorder. However he was the same one that said theirs nothing wrong with me when my issues first flared up...

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Hi there,

If it were not for Dinet, I would not have considered that I had EDS Hypermobility. My husband was somewhat embarrassed during the numerous genetic questions of "what brought you to our clinic" until I scored a 9/9 on the Beighton scale (i could not bend myself like in the pictures) and was told I met every major criteria. I now know what is wrong with my daughter too. So follow your gut.

This is one of the best articles on EDS by Dr. Levy. The article focuses on EDS hyper mobility but also discusses the other types.

http://www.ncbi.nlm.nih.gov/books/NBK1279/

This is the website for the EDS Foundation where you can find information in addition to great info from Dinet.

http://www.inspire.com/groups/ehlers-danlos-national-foundation/

Feel free to PM me any time. I see Dr. Dhar in Houston. She has assembled a team of doctors who understand EDS. Because such a large percentage of EDS patients have POTS, her team understands POTS just as well! (so far so good :) )

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Your best bet is to be referred to a geneticist. The geneticist would test you for it. If you think you have type 3 some rheumatologists and pain doctors can do the testing for that type, but for the other types I believe the only people that can truly diagnose you with those forms are geneticists.

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Thanks to all that posted and those that PM'd me! I called my Neuro and the nurse called back and said the Doc didnt feel I have it...

I'm not flexible, but both elbows "used" to hyper extend slightly. My right one was broken for 3+ years before I got it fixed. (I dont ever remeber breaking it). I was told over and over again that it was Tennis elbow... I can go into more details but you get the point. I'm seeing my other family Doc next week. She's listens great and will either refer me to a doc or if its a specific lab test she will have it ran.

I recently was tested for Autoimmune but all the levels were good except one. My Neuro said he's not worried about it. I'll check my records and post what it was.

Here it is:

MPA IgM, Serum 39 53 - 334 mg/dL L

Last week my Allergist ran a test for Mast Cell. Its a small local practice and he said it takes a few weeks to get the results back. So I'm patiently waiting...

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Monstrosity,

I haven't yet gone chased down EDS, but there are 6 or 7 different types of EDS. Hypermobility is a classic sign of only the first type. Vascular is a different type. I have a strong family history of vascular issues (family history of multiple types of aneurysms and sudden cardiac deaths) as well as a personal history of brain surgery for a rare vascular tumor), and know tht once I get on my way with the MCAD diagnosis, I plan to follow up with EDS.

Which MCAS test did your Allergist run? Most start with tryptase, but this test rules out mastocytosis (too many mast cells). Folks with overly sensitive mast cells (MCAS) have a tryptase in the "normal" range, so don't fret if it is normal. The work up includes numerous tests to look for elevated mediators, such as prostaglandins, N-Methylhistamine, and heparin. In case you haven't heard, the experts have now began calling it MCAS - syndrome, verses D=disorder.

Best wishes on your search for the root cause or your issues,

Lyn

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Hi there,

If it were not for Dinet, I would not have considered that I had EDS Hypermobility. My husband was somewhat embarrassed during the numerous genetic questions of "what brought you to our clinic" until I scored a 9/9 on the Beighton scale (i could not bend myself like in the pictures) and was told I met every major criteria. I now know what is wrong with my daughter too. So follow your gut.

This is one of the best articles on EDS by Dr. Levy. The article focuses on EDS hyper mobility but also discusses the other types.

http://www.ncbi.nlm..../books/NBK1279/

This is the website for the EDS Foundation where you can find information in addition to great info from Dinet.

http://www.inspire.c...nal-foundation/

Feel free to PM me any time. I see Dr. Dhar in Houston. She has assembled a team of doctors who understand EDS. Because such a large percentage of EDS patients have POTS, her team understands POTS just as well! (so far so good :) )

Hi Monstrosity,

I just got diagnosed with EDS but had absolutely no idea. I checked myself for this condition but didn't think I had it. I would keep checking until you get a no from a credible source.

Trish: I have made an appt with Dr. Dhar but it is not until JULY! Yikes! I hope it's not always that hard to get in to see her. Will I be seeing her often as an EDS patient? The receptionist gave me a hard time about being diagnosed and the tests that I have had but Dr. S. didn't really run any tests - just a physical exam. I am concerned that I will wait until July and then they will tell me I need to see another doctor first for referral.

Any thoughts?

Marti

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