4 yrs ago began have transient binocular vision loss 12-15 x's a day lasting seconds. 6 mos ago, transient peripheral vision loss accompanied by headache pressure at base of skull (which has been constant 24/7 since) along with nausea, tingling/numbness on right side of body, burning pains in head and right side of face, transient vision episodes, focal gaze staring episodes, twitching, orthostatic hypotension, positive Babinski response (by neuro), fatigue. Never actually loses consciousness, just gets very close to it.
She had one episode lasting 30-45 secs when could not spell her name and another episode where words came out jumbled lasting 30-45 secs. Another occasion, school nurse noted dilated pupils that would not constrict to light with blood pressure of 88/40, pulse 70, and a headache worse than normal. During focal gaze episodes, she said tried to talk but couldn’t and that she could hear me but my words were in slow motion, lasted maybe 2 mins.
However all test fine: MRI & MRA of brain & cervical clean, chest x-ray, neurological exam (except for Babinski) fine, Opthamologist said eyes fine, echocardiogram, EKG, EEG, Spinal tap, Western Blot Lyme Test, Heavy metal blood test, CBC, Hormone blood test, Tilt Table test showed orthostatic hypotension, peripheral vision test fine.
She does have normal low blood pressure (90/52), she has fibroadenomas in right breast (biopsy showed no malignancy), she has large globular pituitary (endo said normal for teen), Tilt test showed Orthostatic Hypotension (several times 80/28 during test but did not faint), she has mild spina biffida occulta, and Babinski response (neuro said not an issue if all other tests are fine).
I am at a loss as to what to do next. She did have a new EEG yesterday, but we do not have results yet. They are ready to write her off to psychological.
Question 1: Can she have MS with clean MRI and clean Spinal fluid?
Question 2: Is Babinski response significant if no other test findings showing abnormality?
My daughter has had the same types of problems. 3 tests for Lyme disease came back negative (there is no good test for Lyme, and it should be a clinical diagnosis). The forth came back as positive for Lyme. She also has mycoplasma pneumonia and on long-term antibiotic treatment - and is progressing. Get her to a Lyme-Literate MD.
Thank you for your resonse and concern. Were any or all of her tests for Lyme the Western Blot test. I have been told that the Eliza, which is the most common test done, is unreliable but that the Western Blot is fairly accurate. My daughter had the Western Blot test show negative. Also, what about the "bull's eye rash"? We have not noticed that rash on my daughter but if it came and went, it's possible.
We cannot rule out Lyme as the cause yet. But we are currently trying to get her to an Autonomic Testing center. A variety of specialists have all talked and they think that an autonomic disorder is the most likely cause of her symptoms especially with the orthostatic hypotension being the strongest symptom.
I will not rule out Lyme until we have a definitive diagnosis.
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