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...
Im a 49 yr old male with an unremarkable medical history. In Feb of 2016 I experienced a bout of double vision, it manifested quickly and continued for several weeks. I went to an optometrist and was referred to an ophthalmologist who then referred me to a neuro-ophthalmologist.
The dv resolved and then reoccurred ( with slight differences, 'stacked images' that varied from left image high in one bout, then right image high, and now side by side most prominent while looking to the right) all with varying degrees of some slight to moderate lip drooping.
Have had MRI imaging of head which back clear, single fiber emg that came back abnormal ( I assume for ocular muscle only) and thoracic CT with contrast that shows no thymoma.
I was prescribed pyridostigmine and took 120 mg 3x daily for about two months. Self stopped after realizing dv had resolved , and have since experienced the third bout that restarting pyrido had little effect on , so self stopped again.
At the last visit with neuro, when this current dv was 'peaking' , we discussed a renewed interest in getting a surgical consultation for thymectomy and starting prednisone with a revisit scheduled for late Jan.
I was somewhat skeptical about an MG diagnosis, but the more I learn about MG especially gaining more information about autoimmune diseases , e.g. the reoccurring bouts and how they seem to align with flares or flare ups , have me more convinced.
I have had no weakness or symptoms other than ocular and have been hesitant to start with prednisone and or exploring thymectomy , perhaps because I don't /didn't think I had 'it'(MG) ' that bad'. What I have been reading lately though seems to suggest a more progressive prognosis and that more aggressive ( or really any, lol) treatment approach in the first year of diagnosis seems to suggest a more manageable prognosis going forward.
Not sure if I in denial or paranoid but starting to think I should be more aggressive .
Brought up trying alternative strategies , he said he would not discourage trying anything, even mentioned the med mj route and he said try anything and gave me his email and encouraged questions and reporting.
I'm interested in getting my testosterone level checked for a baseline and possibly a boost, I've seen some interesting things with T and autoimmune 'things'. I figure the worst case scenario is a healthier boost going into a course of what I see now as the dreaded "P".
My own MG went away when I started testosterone replacement -- not sure there was any connection between MG and testosterone, but the replacement did make me think life was worth living. My test was very low and I was diagnosed with hypogonadism (defective testicles) ostensibly from mumps as a child, but as I am a father and never had troubles before my 60s, not sure that is the case. As part of osteoporosis treatment to counteract prednisone and low testosteron I was the gel. Later my endocrinologist said that our immune system can attack
Anyway, it is worth trying it if you your tests are low.