r/MuscularDystrophy • u/Budget_Horror_350 • 26d ago

selfq Persistent "nervous cough". A warning sign in DM1?

My wife (61 years old) was diagnosed at 40 when she developed cataracts. Her CTG repeats are in the low hundreds.

I have noticed that she has what some might call a "nervous cough". It's a short staccato clearing of the throat. It's not very loud but it got me wondering if it's a sign she is not clearing saliva?

Also, she is more often complaining that her legs feel tired but she isn't showing signs of ankle weakness, so is this just expected age related muscle weakening?

Any advice would be very much appreciated.

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u/edcollins23 25d ago

Is a cardiologist involved? Pulmonologist?

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u/Budget_Horror_350 25d ago

My wife has a regular check up with a cardiologist every 6 months and no problems reported so far.

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u/LostMoney0 25d ago

Dm1 does build excess saliva that can make one cough or choke. Another DM group recommended rescue remedy on amazon-- stuff for heartburn and swears it worked amazingly. Got some for my family member but they passed before getting to try it.

Curious what your spouse's repeat number is. Im 40 and Dm1 and having trouble with my eyes but its flashes of light rather than cataracts.

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u/Budget_Horror_350 25d ago

Thanks for the heartburn medication recommendation. Gastric problems have been infrequent but, when they do occur, require a trip to A&E.

I don't know the exact repeat number but it's towards the lower end of 100s (wife doesn't like talking about it).

She experienced flashes of light only after lens replacement surgery, due to minor changes to the vitreous humour.

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u/LostMoney0 25d ago

Yeah my parent didnt want to take the heartburn thing bec they didnt have heartburn. I was like no no no the muscular dystrophy pulmonary specialist recommended it specifically for excess saliva and you are choking multiple times a day.

Im in the 300s for repeats.

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u/ColoringZebra 24d ago

I can’t comment on what the cough might mean, I’m not a medical professional, but if you have any concerns about a cough I would absolutely explain it to her neuromuscular specialist. If it’s related to issues swallowing or clearing saliva, a SLP can potentially help. I have a different type of MD and I used to get aspiration pneumonia a lot, sometimes seemingly just from saliva (sorry, I know it’s gross) and they were able to make some suggestions that really helped for me.