MG breathing prob
 

I have my father in hospital now.we diagnose 2 weeks ago with MG. After one week he had a breathing cris and go to clinic dead but fortunatly he was to hospital. He had 2 months dont eat normal . He was intube for some days and doctors today take of. Now is with normal breathing but is very tired when he breath. We start to do plazmaferez yestarday. He is in a hospital in Albania. Now he take Mestinon 60mg and Deltacorten.

Hi Yllillilo

Welcome to NeuroTalk :).

I am sorry to read about your father.

The MG forum is very active so I am sure that you will get lots of support and helpful suggestions from other members.

Best wishes.

If plasmapheresis and his meds seem to fail to work well, ask about Immune Globulin Infusion. It is widely used in the USA for autoimmune disorders not controlled by the treatments you've listed.

Hi.
Thnx for your help. Hope to do well with plasmapheresis. We took 2 seson and we have and 3 left .one every 2 days with 12 bootle ambuline 250g.


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Hello, Yllillilo, I'm sorry your father is having difficulties after the MG diagnosis. That can happen. It can take a while for someone to become stable. Once they are, and a treatment plan is in place, things should get better!

The feeding tubes are okay. Gross to look at but good for someone who can't eat. My Dad had one and did fine on it.

Intubation is useful as well. That gives the breathing muscles time to rest and become stronger.

Since MG patients often have other issues, a doctor might want to test for some basic things like B12 and D vitamin levels, a thyroid level, and a comprehensive metabolic panel.

Steroids can make someone with MG weaker before becoming stronger. Be careful that they don't try to wean him off of that too soon (if they intend to do that).

What else can we help with? Just hang in there. It sounds like the doctors are doing everything they can to help him!

:grouphug:
Annie

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.

:grouphug:
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!

:grouphug:
Annie

[

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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