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Newly diagnosed
Registered: 09-07-2017
Posts: 5
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Here goes my earliest symptom I can remember is my shoulder trembling when leaning on it thought nothing about it back in October of 2010 shortly after that if I out stretch my hand both index finger shake then fasciculations everywhere now there just part of every day life worse when I use that muscle non stop in 2014 when to the dentist she noticed fasciculations on tounge so back to the neurologist I went she said let's wait and see to this day there constant it was a couple of weeks ago she had blood drawn and confirmed KD is there not a lot of information on this just wondering why it took 8yrs PS is constant fasciculations common with I hear a lot about tremors not much about fasciculations thanks for your time
Location: south carolina
Registered: 10-09-2011
Posts: 20
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Yes fasciculations are common. The tremors and cramping is what i noticed the most which all started in my early 30s.

I went ten years or so to doctors saying something is wrong with me without any answers. I was diagnosed in 2011 with ALS and i decided to go to the Mayo clinic for a second opinion.

The Mayo clinic was great right away they said it was not ALS. I am thankful to finally have a diagnosis and know i am not crazy for thinking something is going on with my body.

I feel very fortunate for my disease to not be ALS. It is a very strange feeling to be told you do not have time.
Registered: 08-09-2017
Posts: 9
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I wondered this too. I ran the numbers and saw how really rare KD is. There are only about 8000 people with it in the US and, assuming half are women who may or may not show signs, that leaves 4000 and I've been to bigger concerts. I'm still thinking about going to the meeting in November. They say reaching out helps.
Registered: 09-07-2017
Posts: 5
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My thought is too people are not getting diagnosed my first neurologist wrote it off like nothing wrong it wasn't till last year when I decided enough saw a new neurologist that she took me seriously she was the one who recommended the test were the first neurologist said your getting older there benign tremors a little background I am pipefitters so a lot of my job is welding can't hold my hands steady to weld I told the first one this and he just say I was fine I felt he took my money but didn't do his job would not listen didn't care
Registered: 08-02-2009
Posts: 206
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To Mickle Spiffy, you are correct. Reaching out does help. I have attended the November conference before, and two things about it are terrific. First, you meet lots of men who have KD and have an opportunity to ask questions. Second, you will meet KD researchers and hear about their work, which gives some hope.

I recommend it.
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Registered: 09-28-2005
Posts: 654
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The number of 1 in 40,000 have KD has been thrown around a lot. Some countries have a little higher incident rate. I believe Finland and Japan (could be wrong).

Fasciculations have been a daily part of my life for forty years. Some times they are worse than others. I liken it to the first Alien movie where the creature is inside a man's stomach and starts coming out. My back muscles are the worst. I feels like a dozen aliens are trying to break through the skin. But, you learn to accept it over time. :-)
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