Progressing Symptoms After TBI/ Sjogrens?

Posted by yayamary @yayamary, 3 days ago

Another cyclist unexpectedly broadsided me, and I went down hard. Arm, hip, and leg injuries healed, but brain didn’t. Completed 3 months with brain injury clinic, PT, OT, ST. Did vestibular therapy. Expected to feel better. Instead, many new symptoms started, new symptoms regularly, and progressively. I’m having trouble getting appointments with neurologist who specializes in movement disorders or a rheumatologist to ask about autonomic dysfunction.
This is the list I took to my neurosurgeon the other day, because he was willing to listen and go over my MRIs.
Neurological Symptoms
Toes don’t work, motor only. Started 10/2024 with 2 toes on left. Now all toes on left and 4 on right.
Fasciculations, started in right leg, now everywhere. Random. Can’t feel most of them. There’s now a growing dip in the muscle where it started.
Unrelenting headaches. Whole head. Might be the eye drops I have had to use. . Was only left parietal since concussion.
Leg pain and weakness, radiating
Nerve pain, sometimes feels like fire for a few seconds, sometimes feels like prickles in arches and down legs.
Cramps and muscle stiffness, mostly feet and lower legs. Electrolytes okay.
Hip pain, glutes pain, mid back, arms, upper arms.
Lower back pain and weakness. Harder to sit up straight. Need lidocaine patches.
Neck pain.
Balance issues.
Drop things, hand weakness.
Profound fatigue, need modafinil to wake up.
Brain glitches. Cognitive. Working memory glitches.
New sensitivity to bright white flashes-brain felt weird, like I’d collapse.
Feet hurt all the time, most painful in morning and after activity. Use rollator in morning and after sitting post activity.
Warm-up phenomenon and gelling?
Autonomic-very dry eyes, mouth, skin, urinary retention, new hot flashes, little or no sweat, 4 UTIs in last year.
Progressive.
Progressive Vision changes since immediately following concussion-increasing astigmatism, changes in depth perception, peripheral vision, astigmatism, and night vision. Have been seeing, neurooptometrist. New lenses last year. Need new ones again. Astigmatism got a lot worse, again. Will do cataract surgery and get toric lenses. Most recent appointment mentioned part of this could be acquired Sjogrens Disease, neurological type?
Dysarthria/Dysphagia. Had laryngoscopy and swallow eval. Not aspirating, but muscle weakness.
Absent or slow reflexes. Some were hyper 10/24. Now absent everywhere.
Critical low B vitamins, B1, B6, B3. Back to normal with high dose supplements. Recently discovered this can be caused by brain injury.
Poor sleep. I may have missed something. 🙄
A zillion labs done, all negative except the B vitamins. Anybody heard of Sjogrens caused by TBI. I’ve read it in a few places.
Not sure how to proceed. Frustrated with the progression of symptoms and hoping they will eventually go away. Ideas? Whom to see?

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