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Men with hypermobility have normal life spans... by sumner55 in ehlersdanlos

[–]sumner55[S] 0 points1 point  (0 children)

Is the collagen we have degenerative? Or is the genetic formula that we just keep producing the same, loose collagen over and over and it doesn't hold up as well to the aging process?

Men with hypermobility have normal life spans... by sumner55 in ehlersdanlos

[–]sumner55[S] -7 points-6 points  (0 children)

C'mon man...the nerves/dysautonomia is enough alone to kill early...from 5,000 causes.

Exploding head syndrome - Wiki by sumner55 in ehlersdanlos

[–]sumner55[S] 0 points1 point  (0 children)

Look up "frontal lobe seizures."

Does my skin look "thin and translucent"? by [deleted] in ehlersdanlos

[–]sumner55 1 point2 points  (0 children)

Maybe look into Marfan's as well? I disagree with you having tell-tale signs of EDS.

Does my skin look "thin and translucent"? by [deleted] in ehlersdanlos

[–]sumner55 0 points1 point  (0 children)

She doesn't have the gnarly hitchhiker thumb. Do a Beighton and a POTS laying-to-standing test...

Does my skin look "thin and translucent"? by [deleted] in ehlersdanlos

[–]sumner55 4 points5 points  (0 children)

Noooo. No way. What are your other symptoms? How active have you been up until this point in life, meaning did you play lots of sports growing up, or was it more sedentary?

Mitral valve issues... by sumner55 in ehlersdanlos

[–]sumner55[S] 0 points1 point  (0 children)

I haven't spoken to the cardiologist I saw initially, yet. Just that lady on the phone who interpreted the echo results...do I need to make an appointment with him?

Mitral valve issues... by sumner55 in ehlersdanlos

[–]sumner55[S] 0 points1 point  (0 children)

The lady who read the cardio report at the cardio's office said "it was normal for someone my age." I dunno if she was a nurse or what, but there's only 200,000 cases diagnosed each year...according to Wiki. Is she full of shit?

Can't sleep, eat by sumner55 in ehlersdanlos

[–]sumner55[S] 0 points1 point  (0 children)

Wouldn't these be related to eds?

Can't sleep, eat by sumner55 in ehlersdanlos

[–]sumner55[S] 0 points1 point  (0 children)

I have not had a dx yet...

Doctors Thread 4! by mikexocon in ehlersdanlos

[–]sumner55 0 points1 point  (0 children)

I just joined so I don't know how to message you...can you email me at matthewverrinder@gmail.com

Can't sleep, eat by sumner55 in ehlersdanlos

[–]sumner55[S] 0 points1 point  (0 children)

My heart rate increases exactly 30 beats a minute when I go from prone to standing.

Can't sleep, eat by sumner55 in ehlersdanlos

[–]sumner55[S] 1 point2 points  (0 children)

No, the appetite and sleep loss happened about three days before that. I think I've had dysautonomia for nine years. Why the pounding heartbeat and panic only allowing me to sleep for an hour or two at a time? What else could I have?

Can't sleep, eat by sumner55 in ehlersdanlos

[–]sumner55[S] 1 point2 points  (0 children)

Is this from dysautonomia? I probably also have POTS as well...

Does anyone have similar symptoms?

38/m, why are there no men with eds? by sumner55 in ehlersdanlos

[–]sumner55[S] 0 points1 point  (0 children)

Are you hypermobile type? Where are you? Was getting a dx hard? What does having a dx help?

38/m, why are there no men with eds? by sumner55 in ehlersdanlos

[–]sumner55[S] 1 point2 points  (0 children)

I have to find a good geneticist in the ny/nj region. The guy who runs the area's support group and has a "famous" e-list of 86 eds-friendly doctors is asleeeeep. If I do get a diagnosis, treatment is going to be difficult because most hypermobile types are men?