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 saw a neurologist once about a month ago. I'd had eye deviation for years, and muscle weakness too, but it got so severe after a surgery in May that I couldn't even sit up for more than 20-30 mins. I had an appointment with my pulmonologist and she came in, saw me slumped in the chair, head flopped over, and immediately referred me to the neurologist. He sees me, orders some blood work and a MRI, then sends me on my way with an EMG appointment for Oct. They said they'd mail me lab orders for blood work. It took them two weeks, so before I got the blood work done, I started having trouble breathing due to weakness. I didn't know what to do, so I called my pulmonologist, who saw me a few hours later. She looked up the neurologists notes and immediately sent me to the ER due to the weakness in my chest, making it impossible to breathe easily or to even cough or talk loudly.
I spent 4 days in the hospital. They think I have MG. I was discharged on Sunday with 20mg Prednisone 3x a day and 60mg mestinon 4x a day. I was feeling amazing, able to do more than I had been able to do in a year. Untill yesterday afternoon, I realized I was slurring my words again. Then that night, the chest weakness hit. It's not as bad as before. I ended up just going to sleep. But today, I am getting weaker. My chest feels so heavy, like it's caving in. Counting fast, I can get to 22. I'm lying down now because I'm tired from sitting up.
I don't know what to do. I don't even have a 100% solid proof diagnosis of MG yet. I don't get it. The mestinon was working, I was able to do so much more without my muscles feeling like water. But now it's coming back. I don't know what to do!
Two possibilities I can think of that are too common with MG treatment starting:
-- you are having a prednisone reaction. Starting at three 20mg pills a day is a fast start, and in some folks that can cause you to get worse before getting better. This can be extremely serious and stopping or cutting back prednisone is required and a slower start needed. Odd your doctor didn't warn you about this--it is very common.
-- you need more mestinon. I started at 3 per day and ended up in the hospital as I really need about 8 per day to function and breathe decently.
So get in touch with our doctor and tell him immediately and if that can't be done you should go to the ER.
About 50% of folks starting on high dose prednisone get "transient deterioration" of their condition so most doctors start with a week or two at 20 mg and then ramp it up.
And most doctors start us with too little mestinon and then ramp it up.
This is from research online
After beginning corticosteroid therapy at moderate to high doses, improvement is typically seen within 2 to 3 weeks. A problem with starting treatment at high doses is that as many as 50% of patients experience a transient deterioration.\The exact cause of this is unknown but may involve prednisone-induced worsening of neuromuscular junction function.[6] This worsening can be serious; in one study, almost 10% of patients who experienced deterioration required intubation. If an MG patient has significant weakness, high-dose prednisone therapy should only be initiated in the hospital where respiratory and bulbar function can be closely monitored. Unfortunately, deterioration can occur for as long as a week after initiation of corticosteroids. It is sometimes difficult to obtain approval for a hospitalization unless a patient already has significant weakness and requires plasmapheresis or IVIg (see below). For patients with milder baseline weakness, corticosteroids can be started at low doses and then built up slowly.[8] Therapy can be initiated with 10 to 20 mg per day and increased by 5 mg every 3 to 5 days. While this will minimize the risks of deterioration, the onset of improvement will be significantly prolonged. After reaching the target daily dose of 100 mg per day (within 6 to 8 weeks), the patient can be switched to alternate-day dosing.
I just want my life back. I want to be able to grocery shop, cook for myself, do stuff!