Thanks, Chemar!

Yllillilo, MuSK is a little different that AChR positive. His doctor might know the differences, but in case they don't, here is a good site for info.

https://neuromuscular.wustl.edu/mtime/mgdrug.html#musk

Please talk to the doctors right away about a BiPAP/APAP. MuSK patients tend to have a worse time with breathing and the bulbar muscles (neck/throat). He needs that assistant while sleeping or napping. But he should be evaluated for apnea and so that they can have the right breathing machine for him.

If plasmapheresis doesn't continue to be successful, they might try Rituxan. Again, I am NOT a doctor and can not give you medical advice, only direct you toward things that might help your dad.

He might need to see a nutritionist for advice on swallowing foods or pills. A pulmonologist is also crucial to evaluate a MG patient. They could do an overnight oximetry or sleep test at home. An oximeter might be useful for your dad as well, to know what his normal is and when that changes.

Sometimes when patients can't breathe in well, they can have atelectasis. That's a small area of temporary collapsed lung. Don't freak out about that! I have that from time to time. A pulmonologist might want him to breathe in deeply after sleeping or napping, or use an incentive spirometer from time to time. But get their advice!

MuSK patients need more careful pulmonary/breathing monitoring.

I hope that helps. Please don't forget to take care of yourself too!

:grouphug:
Annie

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Hi Annie.
We take out of hospital yestarday and now we are at home after 33 days. My father is week but good. He eat a lot and sleep good. We start to walk for some minutes evry day.

Don't push that physical envelope too far! If you can, get him a Desk Cycle instead of going for a walk. Isolating muscle groups instead of using all of them for walking is better when someone's MG isn't stable.

He still needs to be assessed by a sleep pulmonologist for his breathing issues. He needs to know if he has sleep apnea!! If that goes untreated, it can cause brain and heart damage.

I hope he continues to do well.

:grouphug:
Annie

Hi Annie
My father has 2 weeks at home and goo very well with food and life. He do some movment from 30-49 minutes evry days. But this 2 days he has some months of pain and he cant move so well.


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