Dear Annie
Thnx you for your support. Today the doctor turn off intubation and now my father is in normal mode. He looks tired. Also the doctor tell to him to take water normal without feeding tube from nose . Is this normal after 3 season of plazoferma? Also the doctor that do plazoferma tell me that is ok with 3 season of plazoferma with 12 bootels 250 of albumina and neurolog doctor tell to do 5 seasons. What do you think. Best regards.


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Also he has problem with sleep. He sleep for ten minutes and than get up. What do u recommend? Br


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I'm not a doctor, so I can't give advice.

If your Dad is waking up every 10 minutes, he probably has either sleep apnea or hypoxemia. He should be evaluated at the hospital for both, and have a BiPAP or APAP fitted to him.

No one should go from a MG crisis and being intubated to having nothing! He is not fully recovered. He needs a breathing apparatus ASAP (as soon as possible).

I can't advise you on the plasmapheresis. More than likely he will continue to need this done. Trust the doctors to handle that. But if they don't give him more plasma treatments, ask for more.

What other medications is he on?

I know how hard this is, to watch your dad go through such a hard time. But kudos to you for being his patient advocate! He needs one. I hope he continues to be better.


Annie

Hi
My father has 3 days without intubation.
Anti musk is positive with 29.

Attach are and analize. **


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Hello Yllillilo

I have removed the attachment from your post as you need to first edit out the name and other personally identifying information. These forums are indexed by Google and other search engines.

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!


Annie