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 initially diagnosed with MG in 2013. I've been treated with mestinon, prednisone, and have tried the IVG treatments. Now I've been on cellcept for over 4 months - 500 mg two tabs twice a day. Was doing Prednisone decrease - 35mg down to 5 mg each day. I feel tired all the time, even when taking the cellcept with 35 mg of prednisone. My neurologist tells me if I wake up tired, it's not due to my MG. I also have sleep apnea. I've been having prednisone decreased due to the negative side effects I've had, (eg - increased ocular pressure with damage to optic nerve. Have now lost most of the sight in one eye). After decrease in prednisone, I have hit rock bottom - constant fatigue, decreased ability to ambulate, struggle climbing steps, loss of balance, feeling weak all the time. Does anybody ever get the diagnostic antibody bloodwork repeated to check effectiveness of meds ?
Sorry to hear the troubles you're having. Can't help with many of them, but feeling tired is not uncommon of course, but can be due to many differing reasons and perhaps your normal doctor is the better person to talk this through with? As for diagnostics with MG let me turn that around a little to concentrate on the measurement of the effectiveness of our treatment. I asked the same question of my Neurologist many years ago and he said that there's no point in attempting to measure (blood tests and the like) to compare the success of our treatment. We take medication that suppresses the immune system and even then the results (as we all know) are variable over time. From that we all continue to get the 'follow this finger' , 'count to 100' and 'press against my hand/arm routines' not very scientific for sure.
Take care
PeterL
Sorry to hear how difficult it is for you. I don't have any answers but I can comment on getting a second test to see if things are worse.
I asked my neuro about this when I was wondering if I was getting worse rather than better. She gave me two answers -- first that the level of antibodies does not seem to correlate with the symptoms. (since then, I have read a few studies that disagree with that). Second -- you don't need a test to find out how you are doing as you know that already by how you feel.
The symptoms that you are having are certainly telling you that MG is worse.
I too have sleep apnea. That is something that can be checked to see if the machine is functioning OK -- most machines have built in displays that can tell you how you are doing -- and they can be adjusted if needed to help.
There are some newer medications that are used with people for whom normal treatments don't work, what are termed as refractory folks. You might ask your neuro about trying something new.
My own fatigue and many of my problems were due to hypogonadism. After that was found to be very low, testosterone replacement to low normal levels brought me back to feel much better. You could ask for a testosterone level test.
Good Luck
Russ
Currently I take 1500 MG of Cellcept a day (750mg 2X) only and I only have symptoms when I push myself extremely hard without mestinon. I keep mestinon around because it is still helpful at times.
Mestinon take about 20-30 minutes to really kick in on a light stomach, so take mestinon and give it a few before you proceed with thing that you find strenuous, particularly exercise (which is a must), Try to get some strength test going to see if you are improving. Start very small and work your way up. We know what you are going through. I could not dress myself or brush my own teeth and now I can do just about whatever I want for a man of my age (50)
TJ from CA