Ehlers-Danlos Syndrome (mild)?

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Well, my cardiologist says I have dehydration issues, not blood flow issues, but now I'm wondering about something else. I have a physical scheduled for Monday.

I've been having lots of leg and ankle pain, as well as often feeling fatigued. One thing I notice as well is that I have a hypermobile tongue and can touch the tip of my nose easily as well as insert my tongue into my nasopharynx (behind the uvula) easily. my skin seems a bit elastic; when I showed my co-workers, they were shocked by how much I could stretch my skin, which would snap right back into place after letting go. I also have a scar from several years ago that required stitches which is still quite visible.

I don't seem to have hypermobile joints so much, but I can make my thumb do the maneuver in this picture:



http://morphopedics.wikidot.com/ehlers-danlos-syndrome

I also have difficulty standing on one leg, as well as mitral valve prolapse (mild), but no aortic dilatation--I do have a bicuspid aortic valve with mild regurgitation, however.

Is this it?

I'm going to show my PCP this stuff on Monday!

if that is what you have, what is the treatment?

It looks like pain medication.

My mum I wonder about because she is already developing arthritis, even though she's in her early 50s.

-tries to bend thumb like that-

...nope not happening

Atom1966,

I had difficulty seeing your post, but after reading about Marfan's syndrome, I don't think I have it. I am not particularly tall, neither am I lanky, with the long limbs. It at least wouldn't be my first suspicion.

I hope to elucidate things at my physical.

What about this thing with the pinky?

Well, I can bend my knee way back and do that thing with the thumb, so on the Breighton scale, I would score 4/9, 1 short of joint hypermobility. I wonder if I would be considered as having EDS anyway. Oh well, I've got lots of stuff to show my doctor at the physical.

Here are some of the things I'm going to bring up to my doc. Is this all set?

· Talk about the fatigue and aches and pains I’ve had lately
· Talk about anxiety over possibly being able to get SRS
· Mention psych med changes
· Show her my hyperextensible skin
· Show her the still-very-visible scar on my left arm (from more than 10 years ago)
· Show her the bruises on my body
· Show her my thumb-to-my-forearm trick
· Show her my bend-my-knees-back trick
· Show her my hypermobile tongue, touching the tip of my nose and “swallowing” my tongue
· Talk about my self-tests when I stand up for extended periods of time; especially how, after about 5 minutes, my legs and feet start to hurt really really bad and my legs and feet begin to have a tremor; talk about the high increases in heart rate I noted during this period. Just standing up straight, my heart rate approaches 100 or above, but after moving around, it drops into the 80s.

EDIT: It might also be worth it to remind the doctor of my mum's really bad arthritis and joint problems, even though she's only in her early 50s. (The doctor I'm seeing is also my mum's doctor.)

EDIT 2: I might also want to mention how I have difficulty standing on one leg and show her the difficulty I have.

Interesting. I have had dehydration issues as a child and still do now. I can still do the thumb thingy!

I also have hypermobile fingers and tongue. I never asked why I had it, but none of my other family members did.

Is it stretchy like this?



BTW, both my parents can do the same trick with their thumbs.

I have EDS

It sounds like you probably have EDS.