Myasthenia Gravis Support Group
Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...
Let me first say I am thankful to find you here ~ I was diagnosed this past Friday, Feb 7. Although my Neuro did a great job at telling me about MG, he can't tell me the nitty gritty about MG. The everyday life stuff that is a part of my new normal.
My dx was first suspected by my eye dr. after I (finally) reported several episodes of double vision. This had been going on for sometime, I just had not reported it. Yep, that's me. :)
The neuro I was sent to is at a military hospital as my husband is recently retired. This Dr. got right on it. Although my AChR came back normal (according to my Internal med.dr), the EMG did not as well as the general exam that my neuro did in the office.
He has started me on Mestinon and I go in the morning for a chest CT.
My biggest issues are the double vision, fatigue, occasional labored breathing and constant need to clear my throat towards the end of a meal and afterwards.
My what seems like a crazy question is: Does anyone have phantom smells with the Mestinon? Ever since I have started taking it, i smell stale cigarette smoke. We are non-smokers so no chance it is coming from our home etc... My other thought was that I have what are called sensory type seizures - I smell things that are not there but those last only from a few minutes to maybe an hour - this has been nearly non-stop since Saturday morning.
I look forward to learning about this thing called MG and thanks for your comments! :)
My dx was first suspected by my eye dr. after I (finally) reported several episodes of double vision. This had been going on for sometime, I just had not reported it. Yep, that's me. :)
The neuro I was sent to is at a military hospital as my husband is recently retired. This Dr. got right on it. Although my AChR came back normal (according to my Internal med.dr), the EMG did not as well as the general exam that my neuro did in the office.
He has started me on Mestinon and I go in the morning for a chest CT.
My biggest issues are the double vision, fatigue, occasional labored breathing and constant need to clear my throat towards the end of a meal and afterwards.
My what seems like a crazy question is: Does anyone have phantom smells with the Mestinon? Ever since I have started taking it, i smell stale cigarette smoke. We are non-smokers so no chance it is coming from our home etc... My other thought was that I have what are called sensory type seizures - I smell things that are not there but those last only from a few minutes to maybe an hour - this has been nearly non-stop since Saturday morning.
I look forward to learning about this thing called MG and thanks for your comments! :)
Sorry never had issues like that but.....we all are different and we all have something that is unique to us.
Ann
He said to give it a week - that he didn't think it was the Mestinon - he had never heard of that before. :)
I think we all have secret symptoms we don't tell our doctors, because this is such a weird disease anyway, and don't want to be thought totally bonkers. Good for you for letting him know! b.
I have heard of this type of thing with seizures and even migraine auras but never with mestinon. That's not to say that it can't happen but I've never heard of hit until now. Interesting to read that others have had the same experience. I suppose that means that its possible. I hope that changing the seizure meds will help with that issue and that it isn't related to the mestinon.
Please keep us posted on whether the med change does the trick. I'm really curious about this now.
Big hugs!!
Angie