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...
So excited to see they have this forum!!! I have learned so many valuable things from everyone. I would love to meet with someone in the Tri-City area of Buffalo, Rochester, or Syracuse.
Here's my story: Two years ago, I noticed leg weakness sometimes going up the stairs, but I attributed it to extra weight I was carrying, bad knees, and I was out of shape. I started working out after that and on occasion my legs randomly seemed week as well. Mid-October this year I had extreme eye muscular pain moving my eyes for several days. That followed with Double Vision October 29. I saw and Optomologist and he said I had 6th nerve Palsy. Two days later I had extreme leg weakness, back and hip pain, and my doctor insisted I go to Emergency for a battery of tests. They admitted me and I had MRI of my head, my neck, and my back spine. They took 5 vials of lumbard spine puncture, and X-rays of my Thymus.I also had two EMG single fiber muscle tests. All of those test were negative to point to a diagnosis. They I went to a neuro optomalogist who tested me postive for Ocular Myastenia Gravis. The optomalogist said 50% of people with Ocular MG do not text positive for antibodies so that is why they could not make a definite MG diagnosis even though they suspected. I am now on 60mg of Pyridosine BR 60mg four times a day.
Does this sound familiar to anyone else with the gradual weakness build up for two years before they were diagnosed?
Here's my story: Two years ago, I noticed leg weakness sometimes going up the stairs, but I attributed it to extra weight I was carrying, bad knees, and I was out of shape. I started working out after that and on occasion my legs randomly seemed week as well. Mid-October this year I had extreme eye muscular pain moving my eyes for several days. That followed with Double Vision October 29. I saw and Optomologist and he said I had 6th nerve Palsy. Two days later I had extreme leg weakness, back and hip pain, and my doctor insisted I go to Emergency for a battery of tests. They admitted me and I had MRI of my head, my neck, and my back spine. They took 5 vials of lumbard spine puncture, and X-rays of my Thymus.I also had two EMG single fiber muscle tests. All of those test were negative to point to a diagnosis. They I went to a neuro optomalogist who tested me postive for Ocular Myastenia Gravis. The optomalogist said 50% of people with Ocular MG do not text positive for antibodies so that is why they could not make a definite MG diagnosis even though they suspected. I am now on 60mg of Pyridosine BR 60mg four times a day.
Does this sound familiar to anyone else with the gradual weakness build up for two years before they were diagnosed?
My eyes were the last to go, too. I had been having sudden unexplained weakness in my legs for about 10 years and other signs that go back to my 20's. I am seronagative as well and was first diagnosed by a neuro ophthalmologist. Our stories are not unfamiliar on this site. I think two years to diagnosis for someone who is seronegative with no eye findings at the beginning wouldn't be unusual, maybe even rather rapid. b.
Welcome. Your profile says you had a stroke, too. How severe was it?
I never heard Syracuse-Rochester and Buffalo called the "Tri-Cities" area of New York. I lived in and went to graduate school in Syracuse and I work in Albany. You learn something every day!
Curt