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...
Hello everyone!
So I went back to the doctor today after a week of being on pyridostigmine 30mg three times daily. The doctor confirmed my labs. I am sero-negative -hope I have the right word there. My thyroid is a little off, but he said it's not so off as to be concerned. All of my other Labs were fine.
I told him that I have seen an improvement in my vision since starting the pyridostigmine, but I still see double when straining my eyes for to long. The more the day goes on the more strained my eyes tend to get and if I don't get enough sleep my eyes get worse more quickly as the day goes on.
I asked him about my being on a beta blocker for bp. He said that my bp has been so good that we would go down to metoprolol 25mg. He doesn't think that would be enough to bother MG if that is what it is. He decided to increase the pyridostigmine to 60mg three times daily for a month.
So, I go back in a month to see if there is any change. He says that it is always possible that I just have weak eye muscles, but that I should put of buying my new glasses...lol -because I might not need them. He also said that if there's ni change that he's going to go ahead and refer me to a specialist and that I will probably need an MRI.
Any thoughts from experience?
So I went back to the doctor today after a week of being on pyridostigmine 30mg three times daily. The doctor confirmed my labs. I am sero-negative -hope I have the right word there. My thyroid is a little off, but he said it's not so off as to be concerned. All of my other Labs were fine.
I told him that I have seen an improvement in my vision since starting the pyridostigmine, but I still see double when straining my eyes for to long. The more the day goes on the more strained my eyes tend to get and if I don't get enough sleep my eyes get worse more quickly as the day goes on.
I asked him about my being on a beta blocker for bp. He said that my bp has been so good that we would go down to metoprolol 25mg. He doesn't think that would be enough to bother MG if that is what it is. He decided to increase the pyridostigmine to 60mg three times daily for a month.
So, I go back in a month to see if there is any change. He says that it is always possible that I just have weak eye muscles, but that I should put of buying my new glasses...lol -because I might not need them. He also said that if there's ni change that he's going to go ahead and refer me to a specialist and that I will probably need an MRI.
Any thoughts from experience?
Hope you find some answers quickly. The eye problems can be extremely worrisome at times as well as just having to wonder what is going on. Hope you do well.
Hope you find an answer :)
Good luck
Annette
Sorry you are still struggling to find answers. It can be frustrating. I think most of us here, myself included can understand. I agree with Annette, you need find a good MG Neuro. Don't give up.
It's just that the doctor seemed to think that the pyridostigmine woukd male my eyes better right away and it hasn't. He hasn't given up on the meds yet, but I can tell that he is now second guessing a bit.
From what I've read on here and other places a lot of MG patients are saying the eye problems are sometimes hard to get a hand on. So far, II've had mostly ocluar symptoms with some slight others.
One thing I wonder about is my doctor saying that my thyroid was slightly off. He said it wasn't enough to be worried about, but I read that a lot of people with MG have thyroid problems and wonder if even with it being slight -if that could hint at it being MG?
Over the last year I have started having migraines that start out as blurry vision and zigzaging flashing auras. I have developed neck tend soon and pain and gone to the chiropracter. I was rear ended about 12 years ago and figured that it was arthritis from that. I get really tired a lot and have often said my head feels like a bowling ball on my shoulders. I've started naping on my lunch sometimes. I often have pain on both sides of my upper chest that I again have put pic to arthritis -It could be. Sometines my chest feels like it's burning and sometimes bubbly. These sensations have caused me to start having panic attacks. I ended up on anxiety meds, but have been weaning myself off now that my anxiety is down.
On top of all of this, my arthritis just keeps getting worse. Spring is always bad. My hands swell and are painful. Right now my left foot is really bothering me. My psoriasis is coming back on my hands. My son has been having major meltdowns at school and had to spend a week in a mental hospital. They now think he has high functioning autism not just ADHD and ODD.
I'm not angry, but definitely overwhelmed right now. It really sucks not being able to drive my car. My family has been good, but is now getting tired if caring me around. I am getting my glasses today and maybe I'll be able to drive.
I know that threre are a lot of people who have it way worse. I know that God is always there for me and this will pass. I am lucky to have a great family, a great family in Christ, and great friends. I've been coming to the daily strength forums for the last few years and it's always wonderful how much support can be found here.
God Bless :)
Good luck
Annette
Good Luck