Newly diagnosed with Myasthenia Gravis
 

Hello, my name is Anne Marie. I really would like to talk to anyone else who suffers with Myasthenia Gravis. I want to learn how others with this disease manage their lives. I have been extremely fatigued for at least a year. I was having trouble with my asthma as well...my meds for Asthma just weren't working anymore. Finally when my left eye started to droop the doctor decided to test for M.G. FINALLY an answer, although it really wasn't the answer I wanted to hear.

Will I ever get my strength back? Will I ever be able to garden for hours anymore? I have been taking Mestinon for about 8 weeks, since I was diagnosed. I started with liquid and slowly built up to a full dose of 60mg 3x day and then one Timespan ( slow release Mestinon) at bedtime (180 mg that lasts for 12 hours ). I wish I could just take the Timespan twice a day. It works the best. I do get a lot of sweating and some G.I. issues but so far I have been able to manage it. The sweating is the worst. I'm hoping over time this side effect will diminish. This protocol gets me through my day but I still tire easily and struggle to not have to nap at 3pm. I would appreciate any thoughts or suggestions from other members. Thank You!:)

Greetings!!
 

Are you seeing a neurologist? You must go to a neurologist with MG experience. I am surprised you are not on Prednisone. The Mestinon only relieves symptoms for a few hours. I am symptom free after six weeks on Prednisone.

Hi Anne, I had been really tired and fatigues for a year or so before my actual diagnosis as well. It was actually my eye doctor who suspected the MG. I was having double vision when I looked to the left and a drooping eye lid on my right side. I was also having trouble trying to "sigh", if you have had that symptom I think you know what I mean.
Right now its been about 16 months since my diagnosis. All my symptoms are better but do get worse depending on stress and the heat. I also have trouble eating, with my lips getting numb and my speech getting slurred when I chew too much. I am now on 60mg Mestinon every 5 hours as well as Celcept twice a day. I do take prednisone, 10mg every other day but I have to be careful because I am diabetic as well and it raises my sugar quite a bit. My neurologist is trying to get me off the prednisone all together though. Well that's my story, hoping we can share more as we go forward.

Newly diagnosed with Myasthenia Gravis
 

hi anne i had a MG crisis last October and was in hospital for 3 weeks When asking the neurologists in the hospital about experiences with MG most of them had almost no heavy knowledge but they did recommend one Neurologist in their group that sees at least 1 MG patient a day and was sent to him when i was released from the hospital. He kept me on both Prednesone and Mestinon for about 2 months as i was pretty bad with speech, eyes and swallowing problems. When i seemed to be much better he took me of the mestinon and only on the Prednesone. That was about 8 months ago and have been tapering off the Prednesone since. During the trigger period in august he did not reduce the amount of Presnesone but now as the weather here in NYC is getting cooler we have started again to reduce. But the most important thing is to find a neurologist who knows about and truly understands all aspects of MG. Best of luck our new friend.

Hi exnewsman had a question for you. When you were hospitalized were you already diagnosed and on meds? Or was that when they discovered you had MG. My neurologist talked about "crisis" but was kind of unclear about how or when. Thank you for youe time and help.