Turtle

Welcome! You might have already considered this possibility, but as you don't mention it, I'll throw it out there because these things on your list caught my eye. Emotionless Anxiety/SNS overdrive No libido Light/sound sensitivity Allergies I was just reading a random website I stumbled across (http://www.mthfrheds.com) and the website owner believes he has found a genetic link to many of his family's ailments, which include dysautonomia, Ehlers-Danlos Syndrome, and autism. These things I pulled out from your list CAN be associated with autism and autism-associated sensory processing disorder. I understand that the disorder forcing you to be homebound and unable to move about as you desire causes depression, but I also see a decreased desire for social interactions with others expressed in your post (when friends force me...). Many normal introverts would identify with a decreased desire to go out and with getting overwhelmed in social situations and needing time to recoup adter, but so would many with autism. The more severe forms of autism, which are often also associated with intellectual disability, usually get the media publicity, but there are many high-functioning individuals like doctors who are also on the autism spectrum. Allergies, asexuality and/or no libido, sensory processing disorders, and feelings of being overwhelmed are also common. They aren't symptoms of autism itself, but they are not at all uncommon with it, either. Having autism is also a potential explanation for why you believe you were born this way. Is it possible that you're facing both autism and dysautonomia? Here's one rough screening test. it isn't diagnostic, but it can point out if you're strongly leaning one way or another: http://www.wired.com/wired/archive/9.12/aqtest.html

Sorry I've not been responding. I've been reading and writing voraciously, taking this all in! Please keep it coming! I'll hopefully get to respond tomorrow.

The thumb to forearm pic I can do with ease. The pointer finger parallel to the arm I can do. The pinky pulled back over 90 degrees I can do with ease. All the fingers together parallel with the arm I get pretty far, but not close to parallel. The "flying bird" hand looks identical to me. The elbow and knee bending backwards I have none of. I have relatives with double-jointedness, but I have none. The skin elasticity I can't tell from the pictures, but I don't think mine is greater than normal. It definitely isn't pronounced if it is there at all. The reference to prolapses as a sign of tissue instability is possible, depending on what that looks like. The frequent sprains, breaks, and dislocations are there. I have some relatives, young and old, who are far worse than me and identify as being "fragile." I identify more as clumsy and accident-prone. Ankles get the worst of the accidents. I have constant subluxation of only one place. The loose joint feeling, like the only thing holding two parts of my body together is the skin surrounding it, only happens episodically. The fallen ankles and flat feet look just like me. Pale skin I think I would be considered to have. I'm not sure. I know growing up, kids most often called my skin color "transparent" so I base it on that. I'm not sure what thin skin means or how to assess it. I don't worry about wounds tearing the skin any more than I think others do if that's what it means. I perceive wounds as healing very slowly. Even small wounds that thers have heal in a week take 1-3 months to heal for me. But I don't have complications, just slow healing. I think I would be considered easy to bruise. They're typical bruises, but easy to get and all over. Removing bandaids cause bruising, for example. My legs usually look like an EDS-diagnosed woman I saw a pic of. I don't know what else to say. There are so many things! What are the critical yes or no things I need to know?

I'm doing searches, but started this thread at the recommendation of Arizona Girl to get personal accounts of EDS. I'm reading the medical stuff, but it isn't giving me a good idea of what it actually looks like in a particular person. For example, can it be episodic? Can joint connectivity issues flair up then recede? What does joint hypermobility actually look like/mean for an EDS patient? Does it mean double-jointed? Is this a required feature? Some more human primers to go along with the medical literature would be really helpful!

Thanks! I'll be searching away!

Thank you! I have some good reading ahead of me. MCAS does not sound like me. I had one episode like that as a reaction and I remember the doctor commenting on mast cell reactivity at the time, but as soon as the therapy was stopped it went away. I'm trying to find a more conversational explanation of EDS. Is this a continuum type disorder or is it one of the ones that is either obvious or not present? I've seen the pictures of those with EDS, so if it is, for example, like Down Syndrome where the features are obvious and distinctive and either present or not then I can rule it out.

Wonderful! I'll search these terms! Thank you! It's an odd solidarity to know I'm not alone. Will you please tell me what MCAS and MPN stand for?

I have systemic about monthly episodes which include pan-dysautonomic symptoms, dermatological flairs, connective tissue and auto-immune problems, neurological, opthalmic and cardiological symptoms. They've been seen on tests with the end of one appearing to trigger the beginning of the next phase of the cycle which repeats on a pretty consistent loop. Doctors don't have a name for the underlying cause which is what's led to the many diagnoses to name symptoms over the years, including the one-off diagnoses of several dysautonomias. There is a decent suspicion that it runs in direct lineage family members who have no Ashkenazi Jewish connection that I'm aware of, but we're not positive if they had the exact same thing. Anyone read anything about anyone similar? I am hesitant to share too much personal info online. If you think anything might even loosely fit, I'll review it and see if it might be beneficial to take with me to the doctor. In particular, it seems like the predictability of the cycle is unique. I haven't read of others with this problem. I am happy to have found you and look forward to many fruitful discussions!