I like it how you still try to see it optimistically and concentrate on what parts are not affected of your body!
For me it’s my knees which is funny because most of the other EDSers I’ve met or heard about get horrible probs with their knees at first or very early, but not me. 😀
For me besides having congenetical hip dysplasia and bad feet it started with my fingers and still my hands are total crap and over the years my other joints like shoulders and ribs became more and more loose.
I also mentioned RO but it didn’t interest anyone and somehow they are not used to look at the most top vertebrae rather than the lower ones.
My Syringomyelia is a long one which starts in my thoracic spine where there are also shadows in my nerve water (artifacts due to blocked CSF). That’s why you can’t see anything on the head MRIs.
And I have a mild scoliosis which can be a result from Syringomyelia but idk.
Nope, I didn’t always get the paralises after sleep, sometimes but not always.
The two last ones happened during the day, one started after the swollen throat sensation, the other one with weakness in arms and legs.
My throat had a swollen feeling and my breath soundes weird but they didn’t see it swelling so it must be anything else.
Well, for my stomach and gut it is more than just taking Vit C as my connective tissue is just hanging there. Result: delayed/nonfunctional peristalsis, reflux, gastritis and strange digestion, you get the idea.
I took C some time ago for some weeks but didn’t notice any improvement.
Thank you so much for your help, I would be really lucky, if you could send me details about this Neurosurgeon in Bad Wildungen via PM.
Thanks!
Samuel