white matter disease diagnosis, new symptoms

[Hazel45]

I have a cousin that contacted me about a health issue. In 1999, she was diagnosed with White Matter Disease. I have been an ICU nurse for almost 25 years, but never heard of this. In researching this for her, I find that she is exhibiting many of the symptoms of progression described in the literature. She states that about 2 months ago, the episodes of what she describes as "floating" became more frequent and severe. She has frequent falls, described as her leg "going out" on her. She has had chronic leg pain related to a surgical issue decades ago, and has been on Neurontin for this, up to 900 mg per day, but she has cut herself back to 600 mg/day unless her leg pain is very severe. She always feels as if floating, even if she is lying in bed. She has to ask someone in her presence if she is moving her head because she can't tell herself if she is. She lists to the right, and now she has episodes of speech impairment, almost an expressive aphasia. All made worse by frustration. Help.

Her neurologist did an MRI in early April. The office nurse called to tell her that the MRI and blood work ruled out MS. MD offered her no other possibilities of diagnosis or treatment except to stop taking her neurontin (again, has been on this for at least 15 years according to her history that she recited to me).

[Dr. A. Srivastava]

Thank you for your question. Although without being able to placing her findings in context with clinical features and the results of other investigation such as hematological, MRI, I can not offer the specific advice & treatment she needs. However, I will try to provide you some relevant information about your health concern.

In white matter disease or microvesicular ischemic disease of brain, pathology is associated with the brain white matter, either exclusively or in combination with grey matter changes. It occurs due to metabolism errors, exogenous toxins released by virus, autoimmune disease, leukodystrophy, demyelination, and radiation effects. Spasticity, muscle weakness, paralysis, hyper-reflexia and movement disorder may be the clinical features associated with white matter disease that need to be evaluated thoroughly. Sometimes there may be wide range of neurological symptoms as she experienced. However, it is sad to say that there is no permanent cure but conservative treatment & physiotherapy exercises that would help you to regain your normal function and stopping the further progression of the disease. Please consult a neurologist in this regards. Hope this helps.

[rumpled]

White matter disease is a very non-specific finding/diagnosis. It basically means that there are some white matter lesions. The cause has to be determined by the doctor. One cause can be MS and so the doc ruled that out, but there can be other causes - minor from migraines up to encephalitis, HIV, toxins, Central Pontine Myelinolysis and others. She needs to find someone to work with her to find another diagnosis. It could be that just neurontin may or may not be all she needs.