Discussions By Condition: I cannot get a diagnosis.

I want help so I can help my daughter - pressure in head, black outs etc

Posted In: I cannot get a diagnosis. 2 Replies
  • Posted By: TiredMom
  • February 26, 2008
  • 07:52 AM

I have a 21 year young 1st year law student daughter. She was reading books at age 4, tested off the charts in 2nd grade and placed in the talented and gifted schools. She started taking college classes at 15 because she was bored in the summer but wasn't old enough to have a job in TX and her entire senior year was AP courses with extra curricular classes on top of that...ok, I have a point and not bragging even though I am very proud and biased. About 2 years and some months ago, my daughter started showing multiple symptoms that appeared to be what we called "growing pains". Dizziness, ringing in the ears and some migraines. We thought it would pass. Then she started having more problems with her vision where she seemed to have a problem keeping her eyes focused without even having a headache at all. She described it as the words moving side to side on the page and her eyes could not keep up. Then she added to the symptoms with blurred vision..now her eyesight is already at like a -675 in both eyes from at about 10 yrs old. She had numerous doctors, blood work, x-rays, cat scans, eye exams, special eye exams, MRIs, Brain MRI for blood vessels. All normal. About a year ago, she is a passenger in the front seat of a car that is t-boned by an SUV and has major injuries. We find out then on top of the injuries that she has a 30% scoliosis S shaped curve...I thought she walked sideways because it was the "girly" thing to do because she doesn't really complain about this stuff. So more time has gone by, now she is having even more symptoms where it feels like pressure in her head but without pain. On the top right side and smack dab in the middle back of head in addition to periods of black outs where she is in class listening to the lectures or taking notes and then next thing she remembers, it is a completely different subject and she is confused. All of her previous symptoms are continually getting worse and my daughter who had not problem with concentration, reading, comprehension, A's is now struggling to even finish 1 reading assignment or class. I need advise? Any test that has not been ran that I have not listed? The latest 2 changes (pressure in head and blackouts have only been happening for the past 2 weeks). She has been flying back and forth from NY to TX once a month for the past 6 months and is scheduled back here again for at least 1 more time. I would like some appointments scheduled if I know which way to go since I am limited on time she will be available. I have even asked her to take a year off of school so we can try to get this resolved. Why should she? They haven't helped her yet. Really sorry it is so long but I think all of this need to be there. If nothing else, it makes for a great bed time story for those who get bored.

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  • I was a hard to diagnose neuro case, worked up for almost everything...As it turns out, I have a rare complication of autoimmune thyroiditis called Hashimoto's Encephalopathy. It can cause migraines, somnolence, coma, memory and language problems, balance problems... lots of different symptoms, and each patient is different.HE is diagnosed by checking thyroid ANTIBODIES in a patient with unexplained neuro symptoms. In many cases, the thyroid hormones are completely normal. Sadly, doctors are trained not to check thyroid antibodies until the hormones are off, first. Most doctors don't know about HE and so will never entertain it as a diagnosis (it took me 8 years and 8 neurologists to get diagnosed).While I'm not sure if this is what your daughter has (and her case was complicated by the accident), it might be worth looking into. I was happy to finally get diagnosed. I, too got sick in professional school, and so I understand how frustrating this must be for the whole family, especially your daughter who is now struggling in school. Though I had graduated with honors in chemistry from my undergrad school, my four year program in professional school got stretched out to many more years because of my fatigue, headaches, and somnolence. You are not alone!I hope she has what I have, since it is very treatable with steroids.
    Anonymous 42789 Replies
    • February 27, 2008
    • 00:41 AM
    • 0
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  • Elke & Blaze, I really appreciate both of your feedback. I am taking all information I can get and doing the research from there so that when Heather comes home in a few weeks we can be more prepared at the many doctors we are planning to get opinions from. That is why I posted because people like you can share your experiences and help people like me and Heather. This can easily change her life for the better and she will always remember you. I believe in paying it forward. This is a great support system. When we figure this out, we will definately repost to all of you just in case you hear in the future of someone like Heather having this problem. Elke, I talked to Heather today and she knows she has all the support here at home and I really hope she takes me up on the time off of school if she needs it so I can help her. I am so happy you made it through graduate school found a treatment. I too hope that Heather's blood tests show if this has been tested or not. I am pulling those records now. If not, I can get her to take that test now so she don't have to wait. That is a much better test then the alternative spinal tap we think she may be taking. Thank you and I wish you the very best:)
    TiredMom 3 Replies
    • February 27, 2008
    • 03:38 AM
    • 0
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