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Brain & Nervous System Disorders Message Board

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Hello everyone:
My 17 year old daughter has been through several dxes in the last one and a half years. Hopefully someone will recognize these symptoms and give me an idea of what to do next.
In May of '05 her school called me to come and get her since she had a bad headache. When I got there she was very confused and was having difficulty remembering certain words. I asked her where her backpack was and she said she couldn't remember the word and wanted to point to it. She pointed to the classroom across the hallway. I got her into the car and started to the ER since she didn't look well. She then after slurring several words said she couldn't feel her hand. Upon arriving to the ER she wasn't responsive. She couldn't squeeze the docs hand or answer any questions. They did every test known which all seemed normal and the neuro said it was Complicated Migraine put her on Topamax and Maxalt and sent us home. She continued to have a few migraines but 6 mos later started having uncontrollable shaking and jerking episodes that would last for 45 mins up to several hours. She started to miss lots of school and the neuro said it was psychological and to see a psychiatrist. It was now christmas vacation and the episodes seem to go away and she decided to change schools to relieve some of the pressure on her. She spent 3 weeks at her new high school with her new boyfriend (knew him for years) and the episodes started again but now she would fall to the right when she walked and complained of back pain and numbness on the right side of her body and her muscles ached deeply after an episode. The neuro couldn't explain it so did MRI w/contrast and saw a lesion on her brain stem. Did another spinal tap and it came back with one test positive for demyelination. Put her on IV therapy for 3 days and a week later her walking improved. She continued to have shaking/jerking episodes and about 6 weeks later she could not walk at all. Back in the hospital neuro couldn't figure it out, still said it was psychological. Sent us home in a wheelchair. Episodes continued with ability to walk would come and go, sometimes she could walk on her own sometimes I had to help her and her legs and arms wouldn't do what she wanted, sometimes I had to have her boyfriend carry her. We eventually got into UCSF Childrens Hospital where she was observed for a week and had several more tests. They decided she had an isolated incidence of Demyelination and it would heal and not return. After we got home she got so much worse but then started to get better in a month. She did "home hospital" school in which a teacher came to the house everyday for an hour and they just touched on the important points of her classes for the semester. She had most of the month of July free of episodes but they started again when looking at colleges, SAT's etc. She started the fall semester at school but started having episodes at school and so she has only gone to school about 8-10 days since August. She is an excellent student with a 4.49 GPA. All along I have seen a connection to stress and episodes but we have tried to eliminate as much stress as possible and she continues to get worse. She was on Clonazepam & Prozac and seeing the Psychiatrist at least twice/week. 3 weeks ago she started having hallucinations and delusions and so the Psych said it was from too much Clonazepam and put her on Risperdal. She continued to get worse mentally, couldn't remember her name,etc and would have episodes where she thought she was a little girl or thought poison was coming out of the air conditioner and eyes on the ceiling were going to kill her. She remembers everything about these episodes after they're over for a couple of hours. She thinks it's the medication that's causing all these mental problems. As of last Friday she stopped the anti psychotic medication and now is only taking Prozac and Buspar. The Psych said this was a long time in coming but my daughter is furious that they think it's psychological and wants to find a doctor that will help her. She has terrible headaches, has shaking/jerking episodes most of the day and complains that her stomach hurts like someone is pressing on it. The headaches are always in the temple area and behind the eyes. Sometimes she says she has terrible pressure in her head. We've been to the ER twice last week and they say everything is normal. Small, insignificant Pineal Cyst and very prominent Neurohypophysis that has not changed since February.
If this sounds familiar to anyone please let me know.

It saddens me to hear about your daughter.It angers me when symptoms are over looked and a psycotic disorder is the given diagnosis.

The lesion in the brain stem,can cause several of your daughters symptoms.You stated that your daughter suffers from eye pain.Has she seen an opthamologist to check for optical neuritis?demyelination of the optical nerves.This can cause eye pain and temple pain.

Have they done a c-spine MRI or of the thoracic spine.These areas can have areas of demyelination.

I had an MS specialist tell me I had an isolated case of demyelination it would go away and never return.I should of gotten a refund,I now have progressive MS.

Your daughter has many classic symptoms of demyelination.Stress and anxiety go along with it.

Keep pushing for futher test and repeated test.It took me 11 Drs. to finally figure it all out.Most Drs. want text book cases and don't want to go out of that scope.

Best wishes to you and your daughter


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