Does anyone who has a confirmed chiari diagnosis been tested for ehlers dahnlos and had test come back negative. I know many have both but I am posing this to anyone who has gotten a negative result. Anyone? Or has it only been run for those who demonstrate the more tell- tale signs? Any answers would help.
I have all the hallmark hypermobility signs… and I remember my rheumatologists doing some blood tests to check for connective tissue disease… but came back negative.
I also have inflammatory arthritis… yet my bloods are “seronegative” which means no rheumatoid factor…
When I had appendicitis, my bloods didnt show high inflammation (as you normally would)
They found inflammation in my colon and an AVM… but biopsies were unspecified inflammation.
I know I have gone off on a tangent… but all tests are negative even though I show physical signs of illnesses… haha
I was diagnosed with both. my bloodwork and skin biopsies just cane back positive for classical (both I&II) and vacular (IV.With the hypermobile EDS there is no test for, yet. They are doing research as to wich genes are responsible, but no luck yet. There is a test for classic (I &Ii) and vascular(IV) and and some of the rare forms, but the hypermobile (III) type is diagnosed by symptoms and the Beighton/Brighton scale. I alco was diagnosed with hypermobile based on the scale and symptoms. The tests are not 100% accurate, only about 60% at this time but they are getting more accurate. It is very possible for them to come back negative (the ones that are able to be tested for) because of this. The skin biopsies are taken so that they can visualize the collagen layers in the skin, it can look very different then normal collagen.
The hypermobile type can also be misdiagnosed in some people because as we get older sometimes we tend to not be as “limber” as we used to be. Most of the time a good geneticist will take that into account, and ask if you’ve ever been able to do the maneuvers that the Beighton scale uses. It all can be so confusing! I hope this helps.
Thanks Barb! its really good to know this! I have never known which specific tests they have done (bloods wise) and never had skin biopsies.
The rheumatologist did ask me to do the maneuvers on the beighton scale and just said I was hypermobile. The only maneuver I cant do is put my hands flat on the floor… but my fingers/thumbs/elbows and knees can do some freaky stuff! Haha.
My skin isn’t stretchy… but I bruise easily and have velvety skin.