I was diagnosed 18 months ago with mild ocular myasthenia gravis. I had ptosis (primarily left eye) and occasional double vision when I was tired. I took mestanon and in general felt pretty normal until last January. It started with parathesia of my left arm which was quite intense but I could generally make it stop by raising my arm and shaking it, elevating my arm, or twisting it. I went to my regular doc since I thought I might be having a stroke. He said I wasn't and sent me for an x-ray of my neck. That was negative and sent me to my neurologist. My neurologist is new to me as I recently, due to retirment and change in health insurance, had to leave my original neurologist who was wonderful.
She said that she did not think this new symptom was myasthenia gravis and sent me to a physical therapist. After several sessions with the physical therapist we decided that this therapy was not helping very much. Meanwhile, I am having pins and needles and spasms sensation on my face, feet, etc. I returned to my neurologist who went through the original physical tests. She said she still thought it was something that could be fixed by physical therapy. She wanted to do an mri of my neck. I had an mri for my double vision before I was diagnosed with MG and I thought I was being buried alive. She then suggested an electromyography and nerve conduction study which I will nave next week. I am simply terrified. I do have a lot of nerve diseases in my family including a patenal cousin with MS, paternal aunt with parkinsons's, dad with ankylosing spondilitis, mom with essential tremor, etc. Of course, I am absolutely terrified of ALS and I think my symptoms are magnified just thinking of that prospect.
Looking at various patients stories on this and other medical forums it seems to me that what I am experiencing is typical of myasthenia gravis spreading from the ocular variety to generalized Mg. I would definitely appreciate any thoughts and advice on my experience
It seems that my pins and needles and spasms