Ehlers-Danlos Syndrome : This is Ehlers-Danlos... - Thyroid UK

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Ehlers-Danlos Syndrome

5 Replies

This is Ehlers-Danlos correct?

5 Replies
Jazzw profile image
Jazzw

I’m not saying that no one here will know - but this a thyroid forum. :)

What stretchy skin you have. :)

shaws profile image
shawsAdministrator

I don't know anything about the above condition and have just looked at the following link. It is something to do with the connective tissues:- excerpt

Ehlers-Danlos syndrome is a group of disorders that affect connective tissues supporting the skin, bones, blood vessels, and many other organs and tissues. Defects in connective tissues cause the signs and symptoms of these conditions, which range from mildly loose joints to life-threatening complications.

ghr.nlm.nih.gov/condition/e...

Your doctor has to refer you to a Specialist who deals with this condition which sounds awful.

Do you also have a problem with your thyroid gland?

in reply to shaws

I have numerous problems, RLS, memory loss, bloating, formication (google this). Thyroid isn't quite right but it's definitely not the primary cause of my symptoms. My MRI shows my spinal cord resting on my uppermost vertebra, which is called platybasia. Basilar invagination would explain my difficulty swallowing, tinnitus, and balance problems. But doctors said it was fine, I'm not sure if a radiologist saw it or just the neurologist. He didn't give me a chance to speak and I was pretty sure he just wanted me in and out. So if it wasn't seen by a radiologist I doubt the accuracy of his analysis. Skeletal abnormalities seem to be pretty prevalent in EDS sufferers so I think I may be on to something. I do have an MRI image posted if you want to check it out.

Jazzw profile image
Jazzw

There’s a forum here: healthunlocked.com/edsuk

They may be able to advise you better?

Anthea55 profile image
Anthea55

I understand that it includes hypermobility (joints which bend further than normal) among many other symptoms. there are several different varieties of it.

My daughter in law has had it for years and has found it difficult to get a diagnosis until recently.

I hope your doctor is supportive. He may not have heard of it, so read up on it as much as you can so that you can go to see him armed with as much info as possible.

All the best.

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