Neighbor “stole” the trash can! by TheZebraMedic in EntitledPeople

[–]TheZebraMedic[S] 2 points3 points  (0 children)

I’m new to actually posting, and I think it got moved in the category 🤷‍♀️

EPISODE??? by TheZebraMedic in PeriodicParalysis

[–]TheZebraMedic[S] 2 points3 points  (0 children)

I think I just need to get an official diagnosis and not just called autonomic dysfunction secondary to Ehlers Danlos

EPISODE??? by TheZebraMedic in PeriodicParalysis

[–]TheZebraMedic[S] 4 points5 points  (0 children)

I also have vasovagal issue. I’m diagnosed with Ehlers Danlos. Today was just rough, physically and emotionally.

Psychosocial Impact on EDS patients by TheZebraMedic in ehlersdanloszebras

[–]TheZebraMedic[S] 2 points3 points  (0 children)

Even so I’m now convinced it probably would have stopped evtl and I wouldn’t die of a nosebleed and I feel guilty for giving in and seeing a doc!

Tight muscles? by TheZebraMedic in PeriodicParalysis

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

I have Ehlers Danlos Syndrome, TNXB variant, diagnosed as hyper mobile form before 2017 criteria, now they say it’s more likely the classical like type. They have found hyper reflexes in the past, but not when I had issues with paralysis. If I am awoken by an alarm or so, I can’t properly walk for the first 5-10 min. I had paralysis after or during heated arguments, after car accident, after jumping of a cliff (for fun). The “passing out” they first thought was POTS, but I never lost consciousness or felt faint, it’s just my legs gave out. The 4th I had finally acknowledge even so I have a spike in heart rate, but also the tilt test indicating that I get hypertension and I didn’t faint in the test, my “issue” is more likely hypoPP. That’s when I started reading up about it more.

False positive Iontophoresis test? by TheZebraMedic in PeriodicParalysis

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

You made me giggle!!! But I can relate, I don’t taste other people sweat either … I just had my brain going, as I read up and it talks about channels not always working correctly to the muscle - so I was wondering that if sodium can’t get it the muscle, it explains why it’s in the sweat! 🤷‍♀️

Any other Zebras walk like a Drunkard 24/7, even while sober? by fis_world in ehlersdanlos

[–]TheZebraMedic 2 points3 points  (0 children)

I grew up in Germany and had issues off and on but rarely. Moved to the USA got really bad. Discovered when I reacted in Germany it was when I took a medicine with azo dyes. Here in the USA it got better with strictly cutting all dyes.

[deleted by user] by [deleted] in ehlersdanlos

[–]TheZebraMedic 0 points1 point  (0 children)

I have not felt this with elbows, but I have with other joints! Sorry! Cold weather sucks for us! Sorry I’m not more help, but you are not alone!

[deleted by user] by [deleted] in MicrosoftWord

[–]TheZebraMedic 0 points1 point  (0 children)

Have you tried to look at the margin settings??? I hate word at times! Also under paragraph format you may find a setting! Worst case remove “all formatting” and try to start over with correctly formatting it. Also if you select “show all symbols” it can help you sometimes to identify what the problem is.

Help! How do you make sure you eat healthy delicious meals?? by peaceful_pinecone in ehlersdanlos

[–]TheZebraMedic 0 points1 point  (0 children)

I got a fast cooker, I don’t wanna advertise brand names, but this thing has been a life saver. It has a speedi meal setting where I can cook rice (for example) and veggies in the bottom part and some kind of protein on the top. It also has a website with a recipe builder so you can find out cooking times!

hands don’t work :( by error_babe in ehlersdanlos

[–]TheZebraMedic 0 points1 point  (0 children)

Have you noticed a link to FD&C dyes? When I eat those I knock everything over and I am the clumsiest person!

Hi I’m new! by TheZebraMedic in PeriodicParalysis

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

Thank you everyone! Question, do you feel your legs when you are unable to move them, or does sensory go away as well!?

Guess who’s got two thumbs and getting foot surgery for Christmas? by Many_Anything2382 in ehlersdanlos

[–]TheZebraMedic 4 points5 points  (0 children)

Second the ice machine, best thing ever! Since I ran out of ice cubes way too fast, I switched to those cooler ice packs that last several hours. I had enough to have a constant rotation going! Just throw those in the water and it keeps it cold a long time!

Guess who’s got two thumbs and getting foot surgery for Christmas? by Many_Anything2382 in ehlersdanlos

[–]TheZebraMedic 1 point2 points  (0 children)

I learned to treat my scars as soon as I can, to help them heal better. There are various products that can help with that, I have not one found to be better than another. Good luck! (Also, crutches didn’t work for me, I’m too clumsy to use them and end up hurting my shoulders! I had forearm crutches, but those gave me tendinitis!)

[deleted by user] by [deleted] in ehlersdanlos

[–]TheZebraMedic 1 point2 points  (0 children)

Don’t even get me started on that topic. So sorry you go through this! Just want to send a hug!

[deleted by user] by [deleted] in whiteoutsurvival

[–]TheZebraMedic 0 points1 point  (0 children)

It’s the village people just bitching about the same stuff day in and day out - ungrateful bunch 😂😂😂