Kennedys Disease Community
Question about symptoms coming and going

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12-13-2018, 10:14 AM
Dan B
Question about symptoms coming and going
I have a question about KD symptoms coming and going. All of the scientific article and websites about KD imply that the symptoms remain the same or get worse as you get older. In my case, I have one or two symptoms actually stop. For example, about five years ago, I had fasciculations in my facial and neck muscles on a daily basis. Since then, they have gradually decreased to the point where I don't think I've had any fasciculations in a year.

Has anyone had any similar experience, or any technical/medical knowledge of why symptoms come and go? Thanks.
12-13-2018, 12:49 PM
Bruce
Yes, I believe many of us have had similar experiences. For exaple, I experienced severe cramps early on, but have not had any cramping in years. Other symptoms have also come and gone and returned again with years in between.
12-13-2018, 02:24 PM
ToddAllen
I think many symptoms attributed to KD can be caused by other factors either alone or in combination with KD. I experienced 20+ years of severe symptoms and rapid decline. But for nearly 3 years I've been very focused on regaining my health and fitness and have experienced a profound abatement of symptoms. For a while I speculated my improvement was mainly possible for having sunk so fast and low and it would stop as I approached a level of fitness typical for a man my age with KD. In these recent years I've had several periods without progress and some dramatic but short lived setbacks. Each time my concern increases but each time I've found a fix or the issues have unwittingly resolved themselves and I'm currently of the impression my improvement is accelerating. I have begun wondering if I'm at risk of being kicked out of the KD club?