Has your daughter had an extensive work-up for Lupus? I have central nervous system lupus. Originally (for 10 years), I only had neurological signs like that of Lymes or MS. After 10 years it started to attack my organs wherein the doctors finally started checking me out for Lupus. Unfortunately, have a more severe form of the disease. From what I understand most do not have it severe. Those 10 years I had basically the same symptoms your daughter has. There are many diseases apparantly that cause these symptoms, such as MS, Mathias Gravis (?spelling), Lymes, Lupus, etc. I do know MS is very very similar to what your daughter is experiencing also and she should be worked-up for this also. A spinal tap may help with a diagnosis of MS or CNS Lupus, so I would stress the importance of that test. Also, MRI, EMG and EEG would be appropriate for this type of thing. I also had neuropsychological testing done which may be helpful in your daughter's case.
I do wish you both the best. These types of symptoms are very complicated and frustrating. I hope you find your answer soon. I hope this helps you some. I will be happy to help out any way I can. Best wishes - Kristin
Dx: Lupus CNS 11/2005; Current - Mitral valve sclerosis, MVP/regurg, dementia; GERD; vision loss, narcolepsy, RA, IBS, ovarian cysts, raynauds, EBV/CFS, inflam. liver/spleen. Rx: Atenolol, Aricept, Flexeril, Motrin Previous-rashes, hemi-pelagic migraine, sensory loss, amnesia, PTSD/Dep., host of neuro problems, pregnancy compl., False pos. syphilis, fine speck & homogen ANA; IgM; staph/strept infections, colonitis, pancreaitis, gastritis, costochondritis, pericarditis, Hashimoto's, dyspnea, hyper/hypotension, lipedemia, ulcers, pneumonia, anemia, Scleroderma symptoms, vein swelling, etc.