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 just recently diagnosed with MG three weeks ago. I have know for six years that I had something, just couldn't pinpoint it.
I called my neuro today to see if I can increase my mestinon. I started prednisone three weeks ago. I am quickly getting worse. Mainly my upper body is weakening. Which causes the "hug" sensation.
I am slightly concerned about my health. I feel that taking so long for the diagnosis has really harmed me. Trying to look for the proverbial silver lining though. It may be fine after my meds are stable.
Thank you for having me here.
Welcome to the group.
MG is an overwhelming diagnosis, and most of us have been undiagnosed for some time before we finally get the news.
MG is due to our immune system making antibodies that attack muscle receptors and both block and kill them, making it very difficult for messages from the brain to get to the muscles, thus leaving us weak.
Normally we are not diagnosed until MG is pretty far advanced and the first few weeks are the worst as we get started in treatment as we are most at risk.
In MG, unlike most neurological diseases is reversible. Our muscle receptors will regrow almost 100% rapidly ( some in 24 hours and some more slowly) when the attack is removed by suppressing the production of the bad antibodies. So the prognosis is generally very good for us to go on to lead decent and long lives with treatment.
My first hospital stay was because I was prescribed Mestinon (pyridostigmine) at too low of a dose. Most doctors start us at something like three 60mg pills per day and then boost the dose if we tolerate it OK and it doesn't help our symptoms. I had to go to about 6 pills per day in the first few months while waiting for prednisone to slow my immune system production of bad antibodies.
A crisis is when we can't breath because either we aren't taking enough mestinon or it no longer helps, and it most often happens early in diagnosis while treatment is ramping up.
Mestinon does nothing to stop the progression of receptor destruction, but just makes better use of those left. It has digestive side effects and so I always took it with a little food and took a loperimide pill in the morning to help.
The most important part of treating MG is getting a neurologist experienced in MG and finding a way to contact them easily and with a day's notice. I called my neuro's nurse and reported problems as they arose and she passed it on to the neuro for adjustments in treatment. Neuro's are terribly busy and hard to get appointments with so you must have a way to communicate what you are seeing now -- progressively worse symptoms. Most likely the neuro will say take more. Most of us end up with a prescription like mine -- take it as needed up to 8 pills per day.
The short term fix if you go into crisis or are not responding yet is to do a blood infusion or cleaning. IVIG is adding blood components that gives you about 3-4 weeks of relief (for most folks). PLEX is running your blood through a filter to remove antibodies. Both are outrageously expensive and may not be covered by insurance except in an emergency.
My own strategy: read everything I could about MG on reputable internet sites like WebMD, myasthenia.org or Mayo clinic. Ask questions. Get a rapid connection to my neuro. And aggressively treat MG. I started on mestinon and prednisone and although I went down first, by 5 months was mostly symptom free.
Finally, any damage so far to your body will go away with successful treatment. The damage is almost totally reversible. Right now your body is damaged, but take away the bad antibodies with treatment and they grow right back and you can get your strength back.
Something like 70% get it under control within the first year and do well. About 15% have a remission where it goes away and about 15% have much difficulty with finding a treatment that works -- sometimes due to other health problems
Good Luck
Russ
Yesterday was a horrible day. I have so much trouble holding myself (upper body) up right now. And my balance is pitiful. Today is a tad bit better. Starting my 50's out in grand fashion huh.
I didn't know that it could be reversed, that adds hope. So maybe the prednisone is causing some slight problem but will get better as it reaches the level that's needed?
This kind of tired is hard to stand up to. Thanks again.
The (in my own opinion and understanding) "hug" is the muscles in the diagram that are weakened and us having to hold ourselves up causes stress and tightness on the lungs. With me it doesn't effect my oxygen level but does cause shortness of breath and can cause the inability to take a deep breath.