Is it ALS

[Mary1402]

I know "Do I or does someone I love have ALS" is the million dollar question, but here it goes one more time. I am assuming that the familia version of ALS runs in my husbands family. His mom died of ALS. She was in complete denial even though 3 different neurologists diagnosed her with ALS. Since she didn't accept the diagnosis, she didn't receive treatment. Since then, 2 of my husbands first-cousins have been diagnosed with ALS. One has died the other is at the end of the disease. Here are my concerns: One of my husbands legs has withered and this same leg gives way about once a day. These symptoms have doubt cast on them because within the last 15 months my husband has had 2 back surgeries and the leg that is weakened could be caused by nerve damage from his discs that had ruptured. Also please know that I am noticing him chocking more frequently, only about once every other day, but that is a greater occurrence than "his" normal. Also, when he sleeps, he has CONSTANT muscle twitching. Last night I literally timed them and he didn't go over 7 seconds before the next twitch hit. The twitching started in his legs and now they are in his shoulders, arms, and hands for sure and on the both the left and right side of his body. At times, I can literally feel the bed shake from them. The twitches have been going on for at least 6 months, but I am not sure when they started. We visited his primary care doctor; who has scheduled us to see a neurosurgeon because of his back history. I have told my husband of my fears that he may have ALS and he believes all of this is caused by his back. I so hope he is correct. Can anyone offer any advice? Am I worrying over nothing? If I have reason to be concerned, please arm me with questions to ask or statements to make to the neurosurgeon next month. Should we keep this appointment or should we have his doctor send us to a neurologist. If that is the advice I don't even think my husband would consider going to a neurologist because he isn't worried at all about this.

 

[LifesWorthLiving]

I would say.....see the neurosurgeon....especially if its a follow up from the bouts of surgery hes had. But do get a referral to a neurologist....

As far as advice on what to say, just tell the doctors the truth of you observations. Also make sure you husband describes his symptoms in his own words. Be proactive make the calls and the appointments.....

 

[LizT]

I agree. See the neurosurgeon... Does this dr know about his families history with ALS?
I would also suggest seeing a Neurologist. You have reasons to be concerned, given the history, but I would get too worked up about it yet because of the back/nerve issues.
However, back issues wouldnt cause choking problems. Id make some phone calls.

 

[trfogey]

The type of muscle twitching that goes along with early ALS would not cause the bed to shake. In fact, the fasciculations that occur in the early stages of ALS are usually so mild that the patients are unaware of them.

Second, the fasciculations of early ALS don't occur all over the body in a short period of time. The hallmark of ALS is that it starts in one area of the body and spreads outward from there.

Third, he should keep the appointment with the neurosurgeon. You, on the other hand, should stay very far away from that appointment until you get yourself under better control. The neurosurgeon is perfectly capable of assessing your husband's condition. He doesn't need your "help" and your husband is able of explaining his own symptoms to his doctors. Given what you've said here and the mental track you appear to be on, any contribution that you might make at that appointment next month is more likely to muddy the waters rather than clarify them.

Finally, if he's not bothered by the twitching and the leg weakness, why are you so bothered by it? Especially given the fact that there is a plausible explanation for the leg weakness and no other real symptoms of ALS. Other than the fact that you've been doing some reading that you don't fully understand about a disease that you know very little about and you've jumped to some very scary conclusions because of your lack of knowledge? You might consider dialing your ALS hysteria back a few notches and allow the doctors do the diagnosing rather than scaring everyone to death with your amateur meddling.

 

[Mary1402]

Ok. Will do. Just so you know the reason that I am so worried is that it is my husband that I love dearly. We watched his mother and 2 cousins quickly lose quality of life from this horrible disease and if that is going to happen to him, I would like for him to check things off of his bucket list while he can enjoy them fully.

 

[TedH5]

Listen I understand with other cases of ALS in his family why you would be concerned. All you can do is allow the Dr's to do their job. As long as the Dr's feel his weakness is due to his spine / nerve issues. Remember it is nknown not ALS until it is not anything else. At this point in time their is a very logical and extremely plausable explanation.

Remember none of us are promised tomorrow so I think it would be best to focus on your blessings in life and not allow the fear of the unknown to monopolize your mind it is a waste of effort and time that you should be devoting to your family.

 

[Mary1402]

Thank you for your kindness. Just get this input makes me feel much better.