Worried for dear husband 😞

[Mairin]

Hi, thank you for your time reading this post. My husband began started having some minor arm fasiculations in 2016, Dec. I believe. He already had a Dx of Achalasia-nerves not working in esophagus causing a motility problem w/swallowing.,decades. He also has had sleep apnea for years. Has Cpap.I gave him minerals and vitamins to see if that was the issue. No help.

I noticed his muscles were wasting away in his forearms and shoulder areas. I attributed it to being a construction superintendent rather than journeyman doing the work. When he went back to physical work, I felt his muscles return. I relaxed. However, they didn't return all the way. Meantime, the fasiculations have spread to other side and chest and muscles have really wasted. His dominant arm which started fasics first, is clearly now smaller than other arm., even he remarked on it. He feels like he can't get enough air laying down sometimes and has to turn a lot.

At my insistence, He went to a new primary since we moved towns. This doc told him "shakes" are normal and that it's "getting older".(52) Doc said That "ALS always begins in the tongue" & he "had a friend with it." I wish that doc could google it. He never looked at the muscles to see these twitchings, which are constant & quite visible, nor tested reflexes nor looked at the atrophy.

My husband has admitted to feeling weakness and not being as strong, (which he has always been remarkably stronger than others...big boned, former football player, etc.) Now feels fatigue and definitely notices the twitching. He drools sometimes and says,"Oops making too much saliva!" He's lost weight since he got on keto 3 weeks ago but I know he had lost muscle mass before we began keto. So its down 20 lbs since June 3rd.which was his doc appt.

My husband tells me, "Well, if it's ALS, there's nothing to cure it. Guess we will find out eventually one way or another." Is he correct to ride this out and see?
Should I press him to go back to doctor?

 

[lgelb]

Regardless of what may be wrong, Mairin, sounds like your husband could do with a different primary care doc. You want someone who is up to date on things. This one doesn't sound like he's up for this, and your husband already has some significant medical issues that require ongoing involvement with a good internist.

So I would start fresh with another pair of eyes, perhaps looking at the nearest academic medical center. If you want to post your town, we can be more specific. The PCP can do blood work to begin to narrow down the possibilities, refer him for other tests, and to specialists such as a neurologist or rheumatologist as needed.

His symptoms do sound worrisome enough to want to know what is wrong, and certainly to know if something more treatable than ALS is involved, including malnutrition related to the pre-existing swallowing problem, or breathing problems that could relate to the apnea not being adequately treated. Time can be a factor if treatment is needed.

You cannot live your lives on a suspicion, it's very possible that something can be done, and personal, financial and legal planning becomes much clearer when you have an accurate picture.

So, in short, yes, I would do some research, find a better doc, make an appointment for him and go with.

Best,
Laurie

 

[affected]

I would also want another opinion, but after 3 years of symptoms without actual failure of any muscles I'd be thinking it could be very treatable and worth checking thoroughly.

 

[Bestfriends14]

Definitely get another PCP. Your guy sounds really uninformed about what ALS is and how it starts. As for your husband's symptoms, they do not sound like ALS because if he had symptoms for three years, there would be some definite inability to do certain things such as stand on toes or heels, pinch grasp things such as doing up buttons, zippers, zip lock bags, or clip is nails. If it had started in his mouth, he would be slurring his words and others would notice. If it was respiratory, it would be much faster progressing then three years. As for muscle wasting, in ALS the muscle wastes after an inability to do something, such as the things mentioned above, not before. So, as far as ALS is concerned, I think that is one thing you can worry less over, but I do think you should seek out another PCP and get another check up for whatever is going on.

Good luck and please keep us posted.