Originally Posted by Yllillilo (Post 1266666)

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.

Originally Posted by 6thCranialNerve (Post 1266744)

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.

Originally Posted by AnnieB3 (Post 1266792)

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

Originally Posted by Yllillilo (Post 1266851)

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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Originally Posted by AnnieB3 (Post 1266886)

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