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...
2/19/18 I had my first symptom of MuSK MG, difficutly spitting toothpaste out, 21 days later I was intubated and sedated in the ICU for 3 days getting IVIG, prednisone, and mestinon. In my 10 day hospital course steriods were being titrated up, and I received my first retuximab infusion. I am now home, which makes me feel better, but so very frustrated. My speech is improved, which was a slurring mess pre hospital,and clearly I can now breath but I still have very little tolerance for activity. My head becomes so heavy, its like carrying a bowling bowl around. My arms fatigue with just brushing my hair, and a shower leaves me feeing like I just ran a marthon. This is so hard since pre 2/19/2018 I was an extremely active hiker and backpacker, planning on another 40 mile trip in April. I know everyone is different, of course the docs won't commit but need some insight from people that have been through this begining stages recently. I'm not looking for when I'll be "normal" I want some insight of feeling better with the basics of life, eating, showering, and talking.
Everyone is different but for me personally I started feeling a lot better around 4 months, was able to taper down the prednisone and just be on imuran and mestinon .
Now it’s 1 1/2 years later and I’m only on imuran and back to near normal. Working full time and back to the gym.
I should also add that I had a thymectomy because of thymoma.
Good luck ! I hope the meds work for you!
Sorry to hear you have MG. Many of us, like you, are introduced to MG when it is so far along we start with a hospital visit. My first 4 months were worst as I got treatment going and then the MG got much better, I could again do things, and begin to figure out long term treatment.
My strategy about MG was to get an experienced neurologist; set a goal to be back to normal (or at least close to it), and then aggressively treat it. The side effects of some of our medications are quite bothersome, but I preferred them to the MG.
Musk MG is different to treat (somewhat) than ACHR+ MG (a more common type). It appears your doctors are moving ahead aggressively and that is good.
MG is better than most neurological conditions -- parkinsons and MS for example, in that the damage done to our neuromuscular junction by our immune system is reversible -- and the junctions grow back quite fast if they immune system attack is lifted. So we can have a goal of normal functioning with treatment.
Some folks have multiple problems that make it much more difficult to treat MG; some can't handle the medications; and about 15-20% don't respond to normal meds that work for most of us.
Rituxamab is a very promising new treatment for MG. That your doctors started it now is actually rather rare as most folks go through a series of other drugs before they get to this one.
Good Luck
Remember, most of us do quite well with treatment
Russ
In my case it took years before for me to be diagnosed I think because I am Hypothyroid.
It took a malignant Thymoma for them to finally test me and diagnosed the MG. By then I was declining but thank God I didnt get to the stage of being hospitalized for it.
Had to be treated prior to surgery which was Dec 2016.
I am currently taking Imuran and 180mg x 2 Mestinon daily.
Instead of getting better I seem to be going downhill. Never use to have much problem going down a flight of stairs now my legs are wobbling.
Waiting to go see the neurologist and hoping I don't get worse.