Kennedys Disease Community
Please allow ,me to introduce my self.....

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04-20-2013, 10:36 AM
Please allow ,me to introduce my self.....
Hi there,

Just curious of the importance of knowing how many repeats you have. Is knowing that helpful? My husband and I recently went to our neurologist and he had all of the results, except for that number. Should I make sure we get that?
04-20-2013, 01:09 PM
Good question. Since Kennedy's Disease (SBMA) is caused by an expansion of the CAG repeats, it is currently the only way to determine if a person has the disease. CAG repeats that are 38 and above indicate you have Kennedy's Disease. Repeats that are 36 or 37 are considered to be borderline and might manifest into some of the symptoms over time. And, the higher the number of repeats, the earlier the onset.

The test is a DNA test. Your doctor draws some blood and sends it to a DNA lab for testing. The results are usually reported within 3-6 weeks. You can read more about the test and also print a copy of the actual test parameters from this link: DNA Test Page . If you have additional questions, please don't hesitate to ask.

This message has been edited. Last edited by: Bruce,
04-21-2013, 09:48 AM
Thank you, Bruce. My husband did the DNA test and it was confirmed he had it but the doctor didn't have the number of repeats in front of him. He knew it was somewhere in his office but we didn't want to wait (ha!). I suppose if we have confirmation that he has it (and he is symptomatic) that number may not be so important at this point. Anyhoo, thank you so much for responding, Bruce, and thank you for all of the information you provide in this forum.
04-21-2013, 11:56 AM
You should ask your husband's doctor for a copy of the DNA test results. You might need it someday (for example: applying for Social Security-Disability or when applying for membership in the MDA and MDA clinic). I have used mine several times over the years and found it very important when we moved and had to find new doctors.
04-21-2013, 12:12 PM
Right, great points. Will make sure we have that.
04-24-2013, 04:28 PM
Dan B
For the reasons Bruce mentioned, you absolutely need a copy of the test results and you should insist on receiving it. Remind your doctor that you paid for the test (or your insurance did) and therefore you are entitled to the results.