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Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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08-19-2018, 02:18 PM | #1 | ||
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Junior Member
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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.
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"Thanks for this!" says: | AnnieB3 (08-27-2018) |
08-19-2018, 03:22 PM | #2 | |||
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Grand Magnate
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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.
__________________
Knowledge is power. |
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"Thanks for this!" says: | AnnieB3 (08-27-2018) |
08-21-2018, 03:37 PM | #3 | ||
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Junior Member
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Quote:
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"Thanks for this!" says: | AnnieB3 (08-27-2018) |
08-21-2018, 04:33 PM | #4 | ||
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Junior Member
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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. Sent from my iPhone using Tapatalk |
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"Thanks for this!" says: | AnnieB3 (08-27-2018) |
08-22-2018, 04:46 PM | #5 | ||
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Grand Magnate
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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! Annie |
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08-24-2018, 09:56 AM | #6 | ||
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Junior Member
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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. Sent from my iPhone using Tapatalk |
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"Thanks for this!" says: | AnnieB3 (08-27-2018) |
08-25-2018, 07:39 AM | #7 | ||
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Junior Member
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Also he has problem with sleep. He sleep for ten minutes and than get up. What do u recommend? Br Sent from my iPhone using Tapatalk |
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"Thanks for this!" says: | AnnieB3 (08-27-2018) |
09-09-2018, 07:01 AM | #8 | ||
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Junior Member
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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. |
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"Thanks for this!" says: | AnnieB3 (09-10-2018) |
09-10-2018, 05:44 PM | #9 | ||
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Grand Magnate
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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. Annie |
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09-25-2018, 02:11 AM | #10 | ||
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Junior Member
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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. Sent from my iPhone using Tapatalk |
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