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...

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Neurologist number 5....

Meng
Meng

Just saw neurologist number 5... Not the worst experince I have had but not sure if it was a big help towards a diagnosis...


First off she thought I had been referred to her due to numbness in my hands and feet??? and she did not have the note from my recent appointment with a GI - who did a good neuro exam and prescribed mestinon or any labs or other important info.


But she listened and did an exam. On the single breath count I got to 24 and by then my voice was nasal and I had difficulty saying the numbers. She only had me sit/stand one time so that did not show much. It was morning and it is what I would call a good day so that did not help. The EMG was negative so guess what - she does not think it is MG.... But she did say maybe just occular MG and that my muscles do fatigue and referred me for a neuro eye exam and said they would do the ice pack test. 


Just really confused.... Was this progress??? She did say I should keep taking mestinon as I say it helps my symptoms,,, My husband was with me and backed up my description of my symptoms. This started in 3/15!!! Think I can feel frustrated. 

Keepsonablessin
Keepsonablessin
You've got to be kidding!

Well, it was my ophthalmologist who suspected mg when I developed double vision and sent me to a neuro opthalmologist... who diagnosed me. Maybe go that route.

I cannot understand how someone can look at a patient's list of mg symptoms and not recognize them for what they are.

I can only imagine how frustrated you are.
Quen1966
Quen1966
Don't feel frustrated I went through the same thing. I had numerous MRI's and two EMG's and two neuro doctor visits after a long year to finally be dx with MG in Sept. 2015. I was getting weaker by the day. My eyes were starting to have double vision and I couldn't keep my eyelids open. I eventually ended up in the ER after collapsing at work in July. The doctors thought I was crazy and stated I was suffering from stress and anxiety. I finally was referred to a 2nd neurologist who listened and ran a 2nd EMG the right way. If your body is cold during the test it can give a false positive or negative results. My current neuro warmed the areas that she was testing and my test results were positive with in the first 10 minutes of the test. I was so happy to finally have a dx and started treatment. I have both ocular and general Mg. So don't give up. I was actually telling my first neuro that I had the symptoms of MG which I read on the internet and he still seemed not to believe. Having resilience is a virtue. I hope you have found the right neuro who listens and works with you. Your symptoms definitely sound like MG. Good luck !!!!!!!
lazor28
lazor28
After my emg/achr antibody tests came back normal, but all docs still couldnt rule out MG, I was referred to a sub-specialist at a large university hospital. Waited 3 months for appointment, only for this neuromuscular specialist to have me stand up, walk 5 steps, and hop on one leg. He barely looked at my 6" thick stack of records, before saying he didnt think MG was the illnesss I had. Not one single test! He talked in circles for an hour and half, and finally decided that my docs need to look harder. His words. So now I've been sent to a rheum, to go back to the hunt for lupus or occult cancer. I am sorry you are going through this, most of us can relate to this frustration. I wish you well! Please update when you get some answers.
cindy990
cindy990
An eye specialist did the ice test on me.. he has another patient with MG. He knew what was wrong the second he walked in the room and seen my eyes. The ice test confirmed his suspension. My current Nero had me in his office in 2 weeks because of the eye specialist. My Nero is great.