Went to The Specialist · 1:20am Aug 1st, 2018
Hey guys! This is all medical stuff and barely story related at all so if you aren't interested feel free not to read!
So I finally saw a specialist yesterday! Yay! It took so freaking long but it finally happened and it went... Well it went great in the fact that I know for 100% that I have Ehler-Danlos Syndrome. I passed and or failed the test for it with flying colors. But my specialist doctor is more concerned about the fact she believes I have Chiari malformation type 1 and possibly a compression to my cervical spinal cord.
So fun! No worries neither are fatal. but diagnosing them are a pain. First I'll have a spinal xray and if that is negative i'll be sent to Renton 3 or so hours away. To have a special MRI. So yeah um I'm actually getting a lot written right now because I have jack all else to do. But it's nice to have a diagnosis! Also apparently I win the award for most hyper mobile knees. Apparently they bend backwards 26 degrees.
I am to never ever bend them back again.
I was diagnosed with Type 1 Diabetes as an adult, which at the time (early 2000s) was rare. While I don't know exactly what you are are going through, I do know that such diagnosis can be life changing.
4911584
Ehler-Danlos Syndrome is a genetic disorder that affects primarily the connective tissues. IE why I was able to bend my knee backwards. It is also very painful. Here is the mayo clinic page on it
But yes, diagnosis is wonderful!
I'm glad you were able to get your diagnosis confirmed. Best of luck with the further tests.
4911600
Thanks am hoping the xray is positive so I don't have to go across the state >.<
Its good to hear they were able to give you some answers. Hope the tests goes smoothly.
4911611
So do I. ^^
Echoing others to say I’m glad you know what’s up now.
4911634
Thanks Trampoline ^^
Well drive safely, the doctors in Renton are good, but I'll never trust the drivers. Also, you know our hopes and prayers go out to you and your doctors.
4911673
Thank you Mayhew ^^ We're planning to make it a over night trip if we gotta do it
4911594
Sounds similar to Marfan syndrome, which I have. Take care of yourself, and solidarity!
4911773
Yeah definitely similar! /)
Solidarity!
Ah, EDS is fun, isn’t it? And dang, 26 degrees, I’ve only ever managed 17.
4911871
Yep 26 Dr. Gugenheim said I won the price for that. And if fun means amazingly painful yep... What type do you have? Doc suspects KEDS for me.
4911873
Eh, just ordinary bog standard hypermobility type. Didn’t really start causing me serious problems ‘till my late thirties a few years ago. Now I’m wishing my folks had done more to discourage ‘party tricks’ when I was a kid.
4911876
Yeah mine started getting bad round 6-8 months ago. Amazing how fast you get used to a 6 pain on the average day isn't it?
I'm almost 32
It's good that you know for certain now, Foals. I understand how painful it must be. Is there a cure or will it just be therapy and pain management? You know I wish you much luck, many hugs and love. Take care!
4911898
It depends on which condition you mean. The KEDS is life long no cure and treatment is...limited But if I have chiari malformation like she believes that can be treated and possibly cured with surgery to remove a bit of my skull or a bit of my spinal cord.
4912009
Sorry, I didn't quite understand that the two were different, though after I re-read your post I do.
It seems that either one will be challenging for you and I wish you didn't have to deal with it. I do offer my support, though. Seriously, though I know I'm on the other side of the country, if I can do anything, let me know. My best wishes are with you always, though!
4912047
I'll let you know if anything is needed. *hugs*
Hopefully the diagnosis gives you tools and techniques to better manage this.
4912170
I sure hope so!
First of all, glad to hear you finally got a solid diagnosis.
Second of all, from what you're describing, I've seen a similar situation on an episode of an old show called Mystery Diagnosis. It featured a young girl who had 3 separate conditions, two of which were Ehlers-Danlos Syndrome and a Chiari-1 Malformation.
Here's a link to the video.
How would you compare her situation to yours?
4912507
Wow, just wow thank you for sending me that. While i'm not wheelchair bound... completely I do have intense headaches and gait problems. I use a cane to walk long distances.
It was really neat to watch that and see just how close our symptoms match up...Thank you *soft hugs*
4912554
You're welcome. :)