McLeod neuroacanthocytosis syndrome
- McLeod syndrome
- X-linked McLeod syndrome
Your QuestionI have McLeod neuroacanthocytosis syndrome. I developed symptoms around age 14. What is the current treatment? I would also be interested in finding people doing research on this condition. I have ticks but I also have muscles that become tight and I believe this has something to do with the movements my body does without control. Is this typical? I also have complex seizures and grand mal seizures from this illness. Is this common? Also, my left side of my body only seems to be affected by loss of feeling or it has intense pain. I also cannot feel hot and cold in most of my body.
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The signs and symptoms of McLeod neuroacanthocytosis syndrome usually begin in mid-adulthood. Behavioral changes, such as lack of self-restraint, the inability to take care of oneself, anxiety, depression, and changes in personality may be the first signs of this condition. While these behavioral changes are typically not progressive, the movement problems and intellectual impairments that are characteristic of this condition tend to worsen with age.For a comprehensive review of the signs and symptoms of McLeod neuroacanthocytosis, you can visit GeneReviews at the following link. GeneReviews provides current, expert-authored, peer-reviewed, full-text articles describing the application of genetic testing to the diagnosis, management, and genetic counseling of patients with specific inherited conditions.
For a comprehensive review of treatment for McLeod neuroacanthocytosis, you can visit GeneReviews at the following link. http://www.ncbi.nlm.nih.gov/books/NBK1354/#mcleod.Management
To locate information resulting from this study, you can either e-mail or call the National Library of Medicine (NLM) Customer Service. Include the title of the study, the study ID number, and the NLM Identifier, and a librarian at NLM can assist you in searching the medical literature for published results on the completed clinical trial.
National Library of Medicine Customer Service
Orphanet lists clinical trials, research studies, and patient registries enrolling people with this condition. Click on Orphanet to view the list.
GeneTests lists laboratories offering research genetic testing for this condition. Research genetic tests may be used to find disease-causing genes, learn how genes work, or aid in the understanding of a genetic disorder. In many cases test results are not shared with the patient or physician. Talk to your health care provider or a genetic professional to learn more about research testing for this condition.
WE MOVE is a comprehensive resource for information on movement disorders. On their Web site, you can sign up to receive their free newsletter via e-mail regarding current information and research on dystonia, essential tremor, and other movement disorders. Click on the link below to view this Web page:
- McLeod neuroacanthocytosis syndrome. Genetics Home Reference. May 2008; http://ghr.nlm.nih.gov/condition/mcleod-neuroacanthocytosis-syndrome. Accessed 7/15/2011.
- NINDS Neuroacanthocytosis Information Page. National Institute of Neurological Disorders and Stroke (NINDS). March 16, 2009; http://www.ninds.nih.gov/disorders/neuroacanthocytosis/neuroacanthocytosis.htm. Accessed 8/21/2015.