Day 4, when were you diagnosed?
I don't have a single diagnosis date, and I'm not about to go through my entire medical history to find out as I would be reading for months. But I would put a start date on my real cycle of diagnosis starting around 2012; whenI was originally diagnosed with a working/possible diagnosis of juvenile arthritis causing my joint pain. When that was ruled out by various tests for viruses, ultrasounds on my joints etc... I got the diagnosis of just Hypermobility, and then later Severe Joint Hypermobility Syndrome which recognises that it has more implications on my health than just being "a bit bendy".
I still have some conditions/symptoms that are as of yet undiagnosed/no cause has been found.
I am also diagnosed with Chronic Regional Pain disorder, as although Hypermobility/ HEDS/EDS III can cause pain in the joints, I have pain litteraly everywhere, I am also diagnosed with Chronic fatigue, Dyslexia and Dyspraxia (why I wear green glasses sometimes as they help with visual stress, and stop my eyes getting strained.) Hearing loss (I am partially deaf (not that bad really) but I do have to wear two hearing aids 24/7).
I have skeletal deformity due to the Hypermobility, and my joints not being held in place as I grew, some sockets are just bent, other sockets surround him as my left jaw socket are too large for the joint ball.
I also have some nerve damage but nobody is quite sure where/ exactly why, I am intolerant to a lot of food and allergic to a few things such as certain plasters and soaps, and I have functional seizures.
I have bilateral muscle weakness on my left side which has can cause issues with swallowing and decreased feeling on my left side due to "episodical left side weakness" (looks like a stroke but no organic/ neurological cause has been found as to why this happens) .
I am also pushing for genetic testing (now just waiting for the referral letter to come) to make sure the type of Ehlers Danlos syndrome I am diagnosed with is correct (EDS type III).
We are having to go private to find out what is causing the functional seizures. I am conscious but have no control.
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