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Registered: 01-12-2020
Posts: 4
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Heya Guys !

Iam Hunor from Hungary,my symptoms started since one year ago with calf fasciculation, than its spread to whole body.I feelt last year my hand mildly weak, and Iam more thierd than before Iam 39 yrs old, with no family history of any another kinda muscular disease. My hands go numb my ring finger and little finger during the night, and I have also back pain, and feeling unstable when I walk, the most hard part is standing. I also have several leg tremor, anyone else with same experience? Thank you for your adds. Happy day!
Picture of ToddAllen
Location: Chicago, IL
Registered: 01-18-2008
Posts: 190
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Hi Hunor, yes your symptoms sound a lot like what I had at your age. Have you had the genetic test for Kennedy's Disease or been given that diagnosis by a physician?

As for the numbness in the outer fingers of the hands, I had the same thing. It also occurred in my feet. It is probably peripheral neuropathy which commonly occurs in type 2 diabetics and I suspect happens in people with KD sooner when blood sugar is unstable but before fasting blood sugar rises high enough to result in a diagnosis of diabetes. In my case the peripheral neuropathy got better as did many of my other KD symptoms when I achieved a normal and stable blood sugar. I got a diabetics finger prick blood testing kit and learned that most foods high in carbohydrates, especially things with refined sugars and flours would spike my blood sugar. I'm 55 and I've been eating a ketogenic diet of mostly meats, fish, eggs, nuts and leafy greens for the past 3 years which has been helping me lose fat and regain a little muscle.
Location: Brooklyn, NY
Registered: 02-10-2017
Posts: 17
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Hi Hunor!

Welcome! Yeah, my symptoms started very similarly, but in my late 20's. I had really bad shin/calf pain then, but that ended after a few years. I have a similar unstable gait, lots of back pain and trouble standing. I've found that taking it easy, getting good sleep, and epsom salt baths after a hard day really help things not get too bad. I haven't dialed in my diet like Todd has - thats next on my agenda. My sweet-tooth has been really standing in the way of getting that together. Take care and best of luck.
Registered: 01-12-2020
Posts: 4
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It started 2018 in middle of December, with muscle twitching and numbnes only in my calves, then the numbness spread all over my body. Since than I had several neuro 7! and every test is turned neg. On the EMG there is fasciculations,fibrillations. My arms during the night sometimes also turn numb. I noticed in 7 mounth's ago iam not able to stay and wait for so long, cose my legs turn to shake and tremoring. The neuoro's dont really no what cause those symptoms, the last one is very concern about Kennedy Disaes and or Isaac. There is someone with same story? Thks for adds..Of course my first thing was on my mind this is ALS.. The refered me to the Lab for testing Kennedy..
Location: Brooklyn, NY
Registered: 02-10-2017
Posts: 17
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It seems like diagnosing neuro diseases can be really tricky - my grandfather lived for 15 years thinking he had ALS, but we now know it was KD. The good thing is the KD test is completely definitive - I highly recommend getting it so you can be sure of what you're dealing with. Best of luck and hoping for the best outcome for you.
Registered: 01-12-2020
Posts: 4
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Dear Ben !
Thank you for your kind words, I think is not ALS, cose I wont be able to walk after 1 year of having this, so I think is something else. Kennedy is not life threating, and we can live with normal lifespan, wich is so nice. I did not loose weight, just have this fasciculation and mild hand weakness and backpain..U have constant fasciculation everywhere?
Picture of ToddAllen
Location: Chicago, IL
Registered: 01-18-2008
Posts: 190
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quote:
Originally posted by Ben:
The good thing is the KD test is completely definitive - I highly recommend getting it so you can be sure of what you're dealing with.


I agree with this. In addition if you have KD you will learn what your repeat count is which somewhat correlates with age of onset and severity of disease. If your repeat count is low and KD is hitting you hard it may suggest other things are also affecting you.

In my case in addition to the issues I had been attributing to KD that got better when I improved my blood sugar a couple months ago I learned I have severe lead poisoning. Since beginning to address that and having dropped my blood lead level from 45 mcg/dl to 23 mcg/dl I am doing much better and hopeful that if I continue and achieve a typical blood lead level of 2 mcg/dl I will continue to see improvements.

I'd go a bit further and suggest that even if you come back with an extremely high repeat count suggesting severe KD stay vigilant looking for other things impacting your health and fitness and do what you can to fix them.
Location: Brooklyn, NY
Registered: 02-10-2017
Posts: 17
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I fully agree. I also agree with the general thought that repeat count correlates with age of onset, not necessarily severity (hopefully) I have a very high repeat count. Looking back my symptoms started in my early to mid 20's. I would not, however, characterize my symptoms as being particularly more severe than others. Fingers crossed it stays that way. Be well!
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Kennedy's Disease Association
PO Box 1105 Coarsegold CA 93614
Tel: 1-855-532-7762
Email: info@kennedysdisease.org