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 was recently diagnosed with MG and it took over four years. During this time, my doctors and specialists told me there was nothing wrong with me and that it was psychosomatic and I just needed more exercise (I’m average build and not overweight). When I complained about not being able to breath, swallow, walk and talk (progressive since 2014) I was never taken seriously. A trip to the Mayo finally gave me some answers and a diagnosis. I’d like to know how long it’s taken other members to get a diagnosis and whether they’ve had a similar experience (I hope not!).
When I was 20 years old, i started experiencing other immune system related issues like lichen planus and chronic urticaria. Both these issues lasted for almost one year.
After these conditions subsided, i started experiencing terrible weakness in my limbs. There was difficulty in walking, speech, swallowing, reading and breathing. I had droopy eyelids and a dull face.
At the age of 22, the neurologist first said that it could be myopathy but after EMG was done he said that since there is a decremental response, it is a confirmation of MG. I was simultaneously diagnosed with peroneal neuropathy.
10 years after i started experiencing initial symptoms, i have finally got the right medicines that seem to work well.
Yes, many of us were mis-diagnosed or undiagnosed for many years before getting the MG diagnosis. We are a very rare group, so doctors tend to think of everything else except MG unless we have the very classic double vision and eyelid droop symptoms (I had that).
When I got my diagnosis, I decided to try to find out everything I could about MG. I have a background in medical research and so went to the internet and read everything I could find from reputable sites -- like WebMd, Mayo, etc. Then I could understand the various treatments and help make my decision.
I chose mestinon and prednisone as the "standard" treatment for the past several decades. Nowadays that is not always how one gets started. Prednisone has side effects (all of the meds do), but it was supposed to be the quickest, cheapest, least inconvenient of my time, and most successful overall starting treatment to get MG under control. It works OK for me going from being in the hospital with breathing troubles to being mostly MG symptom free in about 4-5 months. With it under control, then one looks for a long term strategy, usually with some drug less bothersome than prednisone.
My advice -- read the information at myasthenia.org and https://www.mayoclinic.org/diseases-conditions/myasthenia-gravis/symptoms-causes/syc-20352036 and other reputable sites (there are a lot of junk ones out there too). Learn all you can. Think of MG as a chronic but manageable long term situation (like diabetes), and get an expert neuro with lots of experience with MG, one who you can talk to comfortably and allows you some autonomy in your medication dosages. You are the person with MG and you can learn to gauge your symptoms and make recommendations as to more or less or different meds based on your own growing expertise.
A couple of things to remember: Our immune system is at fault; we have to suppress our immune system to get control; doing that is always complicated and an ongoing balancing act to have some immune system and yet relief from symptoms. Also remember that our muscle receptors that are blocked and destroyed grow back rapidly when the attack from our immune system is lifted--so rarely do we have permanent damage if we keep MG under control. Most of us get the diagnosis, flounder around a year or so figuring out what works best for us and then settle in to a decent life with ongoing medication. For most folks life is good and full with MG and often our battle is more with the medication side effects than MG itself.
Good Luck,
Russ