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 .
Not all folks with mild MG progress to worse symptoms -- but most do.
MG symptoms are often intermittent, and some folks do get by with just mestinon. Most of us don't.
If you decide to delay starting treatment, you should be very very careful to note changes in your condition that show worsening symptoms--the sign you should get it started soon.
MG antibodies both block and destroy the nerve to muscle receptors. By the time symptoms appear, estimates (from researcher papers) say as much as 80% of the communication is lost--and much of that to destroyed receptors. We have lots of redundancy built in, so we can get by with less than that OK. But it also means that we are pretty close to a tipping point of spending a month in the ICU too. The good news is that when the antibody attack is removed via immune system suppression, the receptors rapidly grow back (days to weeks).
MG is such a serious condition, but also so variable between different folks and within yourself week to week, that it is hard to track ones condition well.
My own MG progressed so rapidly from double vision, to ptosis, chewing difficulty and breathing difficulty I was about 3 weeks from diagnosis to my hospital stay. So in my case, treatment sooner would have been much better.
Good Luck Russ
I plan to go for the consultation on the 11 th. From what I think understand about the pharma , the pyrido rarely helps with the muscle groups that cause the misalignment ( along with personal experience) , though does/ can help with ptosis, I am starting to think I should start with prednisone. This current bout of dv seems to be simmering out, only prevalent during pronounced right side gaze.
The first bout was jarring, but I've become accustom to the coming and going aspect , just not sure why I don't pull the trigger and ask for the script. Well actually I know why, the side effects , but I'm becoming more concerned about the 'side effects' of not being proactive.
That and I just can't seem to find a cool eye patch.
My concern , knowing how individualized this diagnosis can be, is how swift a possible progression could be, and how could it manifest. We have been exploring long term placement options recently, not sure what if any weight I /we need to assign to this diagnosis and or treatment options.
If it should 'generalize' will I still be able to function day to day with caregiving tasks? I know enough ,I think, not expect to have these questions answered, but asking and hearing of others' experiences seems to be what I am looking for in
' figuring this out'
Thx again for the replies and I will apologize again for the pest I may likely become
Nice and sorry to meet you, too.
I am leaning toward the surgery, next week I will learn more about the details.
Having only experienced a few bouts of dv , it seems (seemed) like anything beyond medication was an over reaction . But as far as what I get out of the study published in Nejm on thymectomies , I'm starting to think not exploring that option would mean I wasn't doing enough, as long as I am confident with diagnosis.
I'm not unhealthy, not ' old' and aside from the expected risks of any surgery the downside even if it turned out it wasn't necessary appear to be less net negative than not having had it and losing any benefit gained.
What types of treatment , if any , have you found beneficial?
My first meeting with the neuro-ophthalmologist, who lists MG as a speciality at least on the hospitals site, was the day after the study was published. I was googling the night before and happened on it.
How/when did you receive your diagnosis?
And thx joe for posting the link.
I suppose I will know more after Wednesday. It appears I would be a candidate for less invasive surgical techniques. I'm skeptical that my diagnosis/classification , 'only' ocular weakness, will be acceptable to insurance as justification, but I did get the referral. So I guess I'll see, speaking of which this bout of dv seems to be very nearly over.
I feel , especially day to day given that the only symptoms are ocular that I am over reacting . I do understand that progression is possible and since I haven't started any IS regimen that I should and do count myself lucky.
Again thank you for all the feedback and wish everyone well.