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...

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Muscles & Bones
/ Myasthenia Gravis Support Group

Flare Ups

onceinparadise
onceinparadise

Hello guys. How long does it take you all to recover when your MG flares up? I feel the older I get the harder it is to bounce back. Thinking about a thymectomy in the long run.

Nanosecond
Nanosecond
Although I was diagnosed only a year ago, I have had MG for over twenty years. For me, the flares in the early years usually lasted about 10 days, and often during the flare a new symptom would crop up and eventually linger or an old symptom would worsen. Nowadays, I usually have mini-flares in which my symptoms worsen. These mini-flares last only about five days, and then I go back to my normal daily fluctuating symptoms. My MG isn't under control yet.

How long do your flares last?
onceinparadise
onceinparadise
Usually 1-2 months. My body seems to go completely off track. Do you ever experience congestion as a symptom?
Nanosecond
Nanosecond
No, I never have had congestion as a symptom.
onceinparadise
onceinparadise
Well I found the reason behind my congestion. I have to eat an anti inflammatory diet. I love dairy but lately its been causing a problem with my recent flare up. I am actually going to try eating cleaner. More veggies and natural meats. I have to leave all the processed stuff alone.
Rhanson
Rhanson
Hi, Sorry you are having problems with MG getting worse at times. Hope you are soon better!

My personal opinion is that having flares is a sign we may be slightly under medicated. Doctors seem to target us to the lowest dose that works -- and figure that out by our complaints and by how much Mestinon we take to keep functioning. They expect us to have flares and cope with them by taking more Mestinon for the duration of the flare.

My own view is I would rather be slightly over medicated and not have the flares. If I got a flare, it meant to me, that I was not taking enough immune suppression medicine. I was willing to take the side effects of a higher dose of immune suppression medication.

My neuro also pushed me to take the lowest dose I could get by with, but at age 65, I preferred an active and functional life and told her that I would live with the consequences and insisted I take enough to stop any flares. And I did. However, I haven't had to face the consequences having gone into complete.remission

Good Luck,
Russ
onceinparadise
onceinparadise
I tried that and got pretty decent results. My last doctor said it was ok to double up on mestinon if I needed to. Well going into month two...see how this goes.