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Neurology (Expert Forum)
20 years of Questions
This forum is for questions and support regarding neurology issues such as: Alzheimer's Disease, ALS, Autism, Brain Cancer, Cerebral Palsy, Chronic Pain, Epilepsy, Fibromyalgia, Headaches, MS, Neuralgia, Neuropathy, Parkinson's Disease, RSD, Sleep Disorders, Stroke, Traumatic Brain Injury
20 years of Questions
by Kristy, Sep 26, 1999 12:00AM
15 years ago, my mom was diagnosed with Lupus - after being
told that it was all in her head and electro-shock therapy.
She was put on Plaquinil, which seemed to help - until
she went blind. It was blamed on the Plaquinil (sp) until
just recently a university hospital told her that it was
due to Gyroapathy, a rare disease. She was also told that
she did NOT have Lupus. The last few years she has been
having an array of different problems. Some include:
hearing loss in one of her ears, loss of control with
her legs. She describes it has if she tries to move,
but the legs stop. Extreme pain in her joints and severe depression. She has had an MRI of her brain, which showed nothing. Her recent blood work shows an increase in both
the red and the white cell count. And now her Family
Dr. is telling her he thinks she might have Lupus.
We are stumped as to what is wrong with her.
She is losing hope as both her sight is gone and her
hearing is going also. She is now scheduled to see a
neurologist, and we are not sure on what kinds of questions
to ask. She is losing faith in doctors period after many
years of being told her problems were "all in her head"
and due to depression. Well, she did not make up losing
her sight or her hearing. These last few weeks have been
rough for her and she just does not look or act like herself.
Any advice would help.
Thank you.
told that it was all in her head and electro-shock therapy.
She was put on Plaquinil, which seemed to help - until
she went blind. It was blamed on the Plaquinil (sp) until
just recently a university hospital told her that it was
due to Gyroapathy, a rare disease. She was also told that
she did NOT have Lupus. The last few years she has been
having an array of different problems. Some include:
hearing loss in one of her ears, loss of control with
her legs. She describes it has if she tries to move,
but the legs stop. Extreme pain in her joints and severe depression. She has had an MRI of her brain, which showed nothing. Her recent blood work shows an increase in both
the red and the white cell count. And now her Family
Dr. is telling her he thinks she might have Lupus.
We are stumped as to what is wrong with her.
She is losing hope as both her sight is gone and her
hearing is going also. She is now scheduled to see a
neurologist, and we are not sure on what kinds of questions
to ask. She is losing faith in doctors period after many
years of being told her problems were "all in her head"
and due to depression. Well, she did not make up losing
her sight or her hearing. These last few weeks have been
rough for her and she just does not look or act like herself.
Any advice would help.
Thank you.
Doctor's Answer
by CCF Neuro[P] MD, RPS, Sep 26, 1999 12:00AM
Dear Kristy:
The diagnosis of Lupus is made by a variety of major and minor criteria. There should be ANA specific antibodies, dermatological abnormalities, usually kidney problems, hair loss, oral ulcers etc. It is basically a clinical diagnosis as there is no one feature that gives the diagnosis. The medication that your mother has taken has lots of known ocular side effects and can induce blindness, vision:tunnel vision, neuropathy, etc. So which came first, does your mother have lupus or is it the side effects of the medication. There should be some lab abnormalities that would suggest lupus, such as a decrease C3 complement level, ANA positive at high titers, and other symptoms. If she had gyrate atrophy then the source is genetic and she has a mitochondrial disorder and there should also be lab abnormalities such as high lactate, and ammonia levels, there should be a reduced activity of ornithine aminotransferase in her fibroblasts and other tissues. I would make sure that there are or are not lab abnormalities before I decided on a diagnosis. That will help possible treatment. Steriods are the medication of choice for lupus as an initial treatment, while low protein, and antioxidant vitamins for the gyrate atrophy. I hope I helped you alittle.
Sincerely,
CCF Neuro[P] MD
The diagnosis of Lupus is made by a variety of major and minor criteria. There should be ANA specific antibodies, dermatological abnormalities, usually kidney problems, hair loss, oral ulcers etc. It is basically a clinical diagnosis as there is no one feature that gives the diagnosis. The medication that your mother has taken has lots of known ocular side effects and can induce blindness, vision:tunnel vision, neuropathy, etc. So which came first, does your mother have lupus or is it the side effects of the medication. There should be some lab abnormalities that would suggest lupus, such as a decrease C3 complement level, ANA positive at high titers, and other symptoms. If she had gyrate atrophy then the source is genetic and she has a mitochondrial disorder and there should also be lab abnormalities such as high lactate, and ammonia levels, there should be a reduced activity of ornithine aminotransferase in her fibroblasts and other tissues. I would make sure that there are or are not lab abnormalities before I decided on a diagnosis. That will help possible treatment. Steriods are the medication of choice for lupus as an initial treatment, while low protein, and antioxidant vitamins for the gyrate atrophy. I hope I helped you alittle.
Sincerely,
CCF Neuro[P] MD
