Difficulty with diagnosis

    • October 16, 2013 at 4:44 pm

      Just some information a friend shared with me….Kennedy’s disease…. Apparently this disease is misdiagnosed for gbs, cidp, mystanis gravis als, ms and a couple of others. The symptoms of Kennedy’s disease mimic cidp, gbs, when some people have difficulty getting a dx of cidp through standard tests like ncv/emg, biopsy, spinal etc. and do not respond to ivig or other drugs used for cidp/gbs maybe they can ask for the genetic blood test to r/o Kennedy’s disease. The mother is the carrier and it is predominately a male disease that significantly starts to strike in the 4Th and 5Th decade. However females can also have the disease it is just less severe.

      Over the years on this site, many have been plagued by tremors and wasting away and had no benefits from various treatments. Maybe they fall into this category. Just offering some info.

    • October 22, 2013 at 12:59 pm

      Can you please tell something about kennedy’s disease because there would be lots of people like me who are hearing about this disease for the first time. Thanks in Advance.

    • October 22, 2013 at 7:22 pm

      Kennedy’s Disease is a geneticaly inherited, progressive muscular atrophy and treatments such as IVIG and PE don’t appear to have an affect. Learn more here: http://www.ninds.nih.gov/disorders/kennedys/kennedys.htm

    • Anonymous
      December 10, 2013 at 7:09 am

      Getting a correct diagnosis is often a major challenge for someone who has a rare disease. Many people are unable to get a diagnosis, are misdiagnosed or have one diagnosis then another. There are many reasons why getting a rare disease diagnosis can be a long, frustrating experience.