Debbie - I changed my screen name to Sharon2024 - Lee is my middle name. My DH did not have to go on the steroids - he held off, increased his Mestinon to 6-8/day and made it through. Once the sinus infection cleared up he did well. Now he only take 2-3 pills/day.
He takes B-12 supplements as well as vitamin D - the doctor monitors his levels.
He is sleeping better - when he was ill (had pneumonia last December) - he was also diagnosed with asthma and sleep apnea - he tried the apnea machine but could not tolerate it. He sleeps pretty well now but when he doesn't he also is weak. He has to rest frequently during the day if he Is doing anything very active.
current weight: 171.0
Fitness Minutes: (30,324) Posts: 23,039 11/30/13 6:44 P
Lee, let me know how your husband does on the steroids.
My arms are pretty weak. Muscles are disappearing. (Upper back of the arms) They are like noodles. We're avoiding putting me on Prednasone because of the diabetes. It's important to take B-12 vitamins. I'm on 1000 mg tabs in morning.
MG has robbed me of sleep. When I get no sleep is when I am Raggedy ann and totally useless.
Hi Barbara - welcome to the team. My DH has been diagnosed almost 2 years now. He has been able to avoid the steroids though he has come very close - in fact we filled a prescription but he held off until he recovered from a sinus infection and didn't need them.
Keep in touch and let us know how we can support you! Lee
current weight: 171.0
Fitness Minutes: (30,324) Posts: 23,039 11/26/13 10:08 P
Welcome Barbara. it is a pleasure to meet you. if you need any help don't hesitate to send me a spark mail.
Well, even though I don't have MG, I can still understand extreme conditions and what it's like being on predisone and trying to lose weight, It can be really hard, especially with the high doses.
Pounds lost: 72.9
Fitness Minutes: (133,402) Posts: 20,969 4/25/13 5:28 P
So glad you are back.. Debbieanne, our team leader, has been doing IV therapy for her MG. Some of us on this team are friends or relatives of MG patients. Peruse the threads, ask questions, and most of all, congratulations on your 17 pounds gone forever!!!!!!!!!
We may not always get what we WANT, but we will always get what we NEED!
Lost 66 pounds!
Posts: 47 4/25/13 3:05 P
hi all. im about to hit my one year mark of being diagnosed. ive had a thymoma removed with full sternal thymectomy. am weaning off of prednisone very very slowly and would love to get back to a normal weight. ive been using something called the game on diet since nov. with pretty good results so far. 17 lbs down. i really could use some encouragement though from folks who understand mg. this is really hard. i feel bad always venting to my husband. anyhow. i was on spark people a few years back, loved it. had a baby, got mg and now im back here. thanks j
current weight: 168.8
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