My 16 yr old daughter has had vision loss (total lasting under a minute 12-15 times a day) for 3 1/2 yrs. 5 months ago, new symptoms started with temporary peripheral vision loss, then headache:
1. Constant head pressure at base of skull 24/7 with no relief from otc pain relievers or migraine meds (Topamax and Maxalt increased pain 20 x's worse than normal)
2. Nausea -almost always, relieved with Levsin
3. Burning pain in head and right side of face occassionally, when in face generally has a rash on face
4. Numbness/tingling on right side of face, and other areas of body
5. Orthostatic Hypotension- shown with Heads Up Tilt Table test, controlled with diet
6. Dizzy & lightheaded occasionally.
7. One occassion with increase in headache & nausea, blood pressure was 88/40 and pupils dilated and would not constrict to light.
8. One occasion, I noted her face pale with bluish tint around mouth and she stated was numb.
9. One occasion, speech came out mixed up, lasted 1-2 minutes.
10. One occasion could not spell her name.
11. Babinski response when Neuro checked and when I check this.
12. Fatigue, has not made a full week of school since Oct when this started
13. Pituitary Gland is large round globular shape (9mm) Endo said normal for teen
14. bad acne (on back only). Dermatologist though staph, after antibiotic did not work, said no.
15. Joint pain, especially the jaw lately.
We have had test: MRI & MRA on Brain & Cervical, EEG, Echocardiogram, chest x-ray, EKG, Tilt Test, Normal blood work, Blood test for hormones, Blood test for lyme, Urine screen for Heavy metals, ANA Blood test, Blood test for autoimmune and connective tissue disorders.
Mild Spinal Bifida Occulta
Right Vertebral artery ends in PICA, does not connect basilar
Low Lymphocytes (6.1)
High Neurophils (89.3)
She does have breast lumps (rignt breast): biopsied and diagnosed as fibroadenoma
All other test fine.
Neuro said Babinski response without other findings not to be concerned about. Other Neuro tests, she noted slightly less sensation on right side of body.
Endo said because hormone test normal, pituitary not an issue.
Opthamalogist said all is fine.
Orthostatic Hypotension improved with diet, but symptoms remain the same.
We are at a loss. I can't bear to watch her get worse each week but do not know what else to do. Last test is a spinal tap tomorrow, but I expect the same results as the rest of the test.
Is the Babinski response an issue if other tests were fine? And, I am concerned about the dilatd pupils (both eyes) that would not constrict. This was tested by the school nurse and 30 mins later did constrict. And, lastly, if the Topamax and Maxalt both caused extreme pain (she was laying on the floor for 1 hour rocking herself back and forth), could this tell us something?
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