He is 28 years old. Very weak compared to a year ago. Be is having trouble walking and now showing signs of weakness in his hands and arms. The doc said that kennedys disease usually starts in the face but he is gonna test him just incase. As of right now they told us it is ALS. We have been together since he was 15 and even back then he had larger breast for a male. He also would have cramps and joint pain on and off. He also would have muscle twitches that would come and go. We dont have any family history but, there are mostly women in his family and the men have all passed away at early ages in life due to other complications
Anyways this does seem like the severe symptoms have appeared kind of quick but now they are leveling off in a sense. Is this normal for kennedys disease or should we accept the diagnosis of ALS? Sensory is ok he says he feels numbness sometimes especially when he is standing still for a while, like 10 minutes. Oh the doc also said he was young for kennedys disease. Any help relieve some of our nerves would be great. Like I said he is 28 he does have larger breast for a male his ck levels was 1250 he alt was 91 his emg came back abnormal. Muscle weakness muscle wasting twitches, hand tremors left side is much worse than right side joint pain back pain he does have a drop foot on left side muscle twitching all over body... thanks for at least reading my crazy story I just need answers and dont want it to be ALS.

Reed&Sam Many of your symptoms match what is typically experienced with KD so I am glad that the doctor agree to order the genetic test for KD, that way you will know certain if you are dealing with KD.
I was diagnosed with KD in my late 50's however after learning about the disease I am certain that what I thought was just being tired or being out of shape much earlier in life were actually KD symptoms.

Thank you for your reply! I know I have been thinking back to the past and he has shown signs for years but young strong man and doesnt know when to stop. He had blood drawn last Tuesday and it has felt like a lifetime for a signal week to go by. Is sensory problems a must have? I think he has circulation problems which is why his legs/feet go numb. We always made excuses for new syptoms and never went to the doctor. L I'm ke he was just sleepy or just grouchy that day and didn't want to go to work. We are 28 and we would make excuses for why he didn't want to have sex. Thinking about it though in your 20s being sleepy shouldn't be an excuse for 5 nights out of the week or more. He lead blowed the leaves away from our house yesterday and last night it was extremly difficult for him to turn in bed.

It is very difficult to accept the limitation that any illness or disease presents and I must admit that I failed in that department again yesterday. While I am still fairly mobile (I can walk with a cane) and can still force myself to use stairs I know better and should have waited for an elevator yesterday after a Pop's concert. However I decided that I could certainly still walk down a long flight of steps. Today my legs are reminding me to accept the limitations that come with KD. I have much more pain today and it will likely take a few days for me to recover from my stubbornness.
Long way of saying it is important to learn how to effectively live with KD and make the most of what we can safely do.
If the test confirms that you are dealing with KD, Please take time to review the exercise guides that you can find on the KD website. I also suggest that you check out the "Living with Kennedys Disease" blog, you can also find a link to that site on one of the KD webpages.