Kennedys Disease Community
Diagnosis/Onset

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02-14-2007, 10:41 AM
KeithK
Diagnosis/Onset
I just woke up this morning & remembered that my onset happened right after i injured my back.Has anyone else had an injury, right after or near the time of onset? I remember that urinating was diffcult from that time on.
02-15-2007, 10:15 PM
Cam
I had a lot of little things, cramping and weakness, for example, but didn't realize there was anything going on til I had a laryngeal spasm one night and couldn't breath. I find that a specific injury or problem sometimes upsets the delicate balance of your body coping with KD, and then individual parts fail as they have to cope with unusual loads. I think that most with KD experience a more gradual onset. This is, however, a disease of exceptions...
02-19-2007, 11:35 AM
Bob Heitzman
I have found that my KD proceeds in steps with some time lag between. The first steps probably occur long before diagnoses. At some point we have something happen that brings use to a doctor and there are enough unexplained/unrelated symptoms that cause us to get on the path to a diagnoses. My gating event was throwing out my arm.

I seriously doubt the gating events have any causal effect but they just occur when we have taken another step.

BTW for the laryngeal spasm - I treated it as mild acid-reflux, in particular no eating/drinking two-three hours before bed time. I also tilted my bed slightly and that helps me a lot. To deal with the spasm I have found that trying very hard to relax does the trick. I've found I can still breath OK, just not at the volume I would like and in a normal fashion until the spasm goes away.

I also think some symptoms come and go. For example I had mild cramping at one time but no longer.


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email:rheitzman at gmail
02-26-2007, 10:32 AM
Cam
Laryngeal spasm was an alarming event for me. Often I can catch the onset, and sort-of twist my neck and catch it before full lock. Once it does, however, I can pass no air until things relax. The best procedure for me seems to be a chin tuck (down to my chest) and try to breath through the nose. Medical consensus is that it will pass prior to unconsciousness, and no-one in the KD community that I have talked with has passed out from it. With experience, I can now remain calm and wait for the spasm to pass.