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...
I saw the neuro specialist on Friday. Was off the mestinon since Tues. The appt. took over 2 hours and I ended up having an EMG as well as the SFEMG as well as a full neuro work up. Totally exhausting as I was still off the mestinon, but I did my best.
The EMG tests were both negative, but the doctor still felt there was something wrong with me and has not ruled out MG because of my history and positive results from the mestinon.
She has ordered more blood work and a brain scan. She also wants me to keep using the mestinon at the same dose that I have been taking.
Because of my medical history and extreme side effects of meds, she felt that going on Prednisone would be very bad thing for me. So upshot is, I am to pace myself and not push it, and NO work. At least, that is the plan for now. I can live with that.
I am reassured that I will be closely monitored by my GP and the neuro's.
I admit that I am, and always have been a very difficult person to diagnose, so why should this be any different? In fact the only thing that was ever easily diagnosed for me was my pregnancy. :)
On the upside, the drive was beautiful. We did our best to make a silk purse out of a sows ear.
Deb.
The EMG tests were both negative, but the doctor still felt there was something wrong with me and has not ruled out MG because of my history and positive results from the mestinon.
She has ordered more blood work and a brain scan. She also wants me to keep using the mestinon at the same dose that I have been taking.
Because of my medical history and extreme side effects of meds, she felt that going on Prednisone would be very bad thing for me. So upshot is, I am to pace myself and not push it, and NO work. At least, that is the plan for now. I can live with that.
I am reassured that I will be closely monitored by my GP and the neuro's.
I admit that I am, and always have been a very difficult person to diagnose, so why should this be any different? In fact the only thing that was ever easily diagnosed for me was my pregnancy. :)
On the upside, the drive was beautiful. We did our best to make a silk purse out of a sows ear.
Deb.
The neurologist also told me to stay on pyridostigmine and never go off of it. In my case they are looking at Mg and a sister disorder called Autoimmune Autonomic Ganglionopathy. Both respond to pyridostigmine as does some types of another disorder amyloidosis.
My old neurologist also did not want me on prednisone. It really makes me retain water and I can only do a very low dose of 10mg without great headaches.
Will be looking for any new news you get and wishing you a smooth ride with your brain scan. Marie
If the Mestinon helps, then I'm happy you can continue with it.
My EMGs are abnormal, but my SFEMG was ok. I respond well to Mestinon and hope it will continue.
Sometimes, there just are not clear cut diagnostics, but good response to treatment (in MG).
Let us know how your brain scans come back.
Kind regards,
Carly
I think at one time or another , we all were in a similar place so i know exactly what your feeling. I feel like your talking directly to me with the " I have always been a difficult person to diagnose " as that was me from the very beginning in 1998.
You have a neuro who is paying attention to your medical history and therefore not going on the prednisone is a positive as i can tell you , not that you don't already know the side effects of pred.
Its nice to see your maintaining a sense of humor and that you enjoyed your ride...Cj