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...
Hi, everyone. Are there any member here that is as old as I am (78) that has been diagnosed with MG? I had double vision and drooping eye lids. I was diagnosed in July this year and put on Pridostigm 60 mg twice a day. He started me off with half that and tried to increase it 2 weeks later. The foot and leg cramps got so bad I went back to half but the foot and leg cramps did not get better. I felt so bad every day I just sat and cried. 2 weeks ago I stopped taking the meds altogether and now I have more good days than bad except for the dizziness and uneven gate. I walk like a drunk person. But no cramps at all.Now I am wondering if I made the right choice. My eye doctor made me a pair glasses with my prescription with priscims my double vision stopped the minute I put them on. Since stopping the meds I have been able to go shopping by myself, cook and do a little cleaning.
The side effects can be pretty bad -- the cramps, although I only had them at night.
I was diagnosed at age 65 (and now I am 71).
The medicine, pyridostigmine, only helps with the symptoms of MG, not the underlying cause. Generally we have to take an immune system suppressant like prednisone to attack the cause, our immune making antibodies that attack the connection between our nerves and muscles and prevent them from working very much.
As your MG has progressed beyond the early stages, it is very likely to continue to get worse as the antibodies destroy the muscle receptors.. Pyridostigmine will not stop this, just help a little until you get worse.
You need to have a neurologist experienced in MG to get you into treatment. You have to let the doctor know you are not able to take pyridostigmine. You really need to start an immune system drug now. There is a short term fix that lasts for about a month if you get bad, called IVIG -- an infusion of antibodies from other people. It is done in the hospital and can be over a few days, and generally works for a month.
Untreated MG, in the days before modern drugs like prednisone, killed about 1/3 of the folks with it during their first year. With treatment of the immune system, you can get rid of most of the symptoms, not need pyridostigmine, and live a decent live.
You need to talk to your doctor now or you are on the path to getting worse and end up in the hospital in what we call a crisis where you are on live support. With treatment you can do well.
Good Luck
Talk to your neuro or regular doctor now
Russ
I am seeing a neuro that my family dr recommended. He does specialize in MG.
The side effects I am experiencing are so bad I feel as if my head is going to explode. All I can do is and cry and that is not me.
Last year in October I was hospitalized with total Renal Failure. I thought I was going to die. I never got my strength back and as things got worse was when my fam dr. sent me to this neuro. He did a mri, cat scan and a ton of blood work. He then gave me the Pyridostigm 60 tab Global PHA. On the bottle it says Generic-Pyridostigmine Bromide. Is this the same thing as Mestinom? I have another appointment with him on the 27th of this month.
You need to see someone much sooner. I generally call the doctor's staff person and tell them what symptoms I am having and ask them to relay it to the doctor. Try not taking the pyridostigmine for a day and see if the headache goes away. That is what the doctor would ask you to do anyway.
Russ