Two sets of MRI’s down, apparently another one has to be done. I should just make a bed in the neurology wing and sleep there for the next month. Needless to say I am pretty frustrated. According to the radiologist and neurologist, my scans are fine. According to people who understand EDS and the “friends” that go with it, I need a second opinion. I am in the opinion of the latter group. My scans are not “fine.” There is a clear retroflexed odontoid causing some compression on the brain stem. There is possibly a minor herniation of the cerebellar tonsils of about 4mm. Unless it’s a severe herniation, it can be difficult to detect on a standard mri, a standing mri is often needed.

I am not a dr, but I do have considerable knowledge of the brain.

I am so exhausted and fatigued ALL THE TIME. I have been fainting more lately and generally feel like crap. I just want to cry and be a 3 yr old about all this. It hurts to stand, it hurts to lie down.

My PT appointment went ok, my body is a lot worse than I thought it would be. I’m not supposed to be walking because my joints are too lose and subluxed; putting an extra weight on them will only make them worse. We are starting with very small core exercises and on Friday I am supposed to go in the therapy pool. My PT is looking into getting a new chair for me. I need one with a tilt function so that if I get dizzy or faint I can tilt back and rest a while. It will also take off a lot of pressure on my hips and spine.

The OT ordered some Oval-8 finger splints for me and made a wrist splint with a thumb spica for me. She’s going to make the other one when I see her next and as well as another set without the spica so that I can have some freedom with my hands to do more art work but still have the support.

I keep fading out… so I will end this for now. Updates will follow…

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