Occular MG

Hi again, Debi. Your AChR test confirms you have AChR Binding Antibody Myasthenia Gravis. You are very lucky in a couple ways. First you got a very quick diagnosis. It takes years for some of us to even get properly tested. Secondly, you have the most common form of MG and the one for which the most pharmaceuticals have been approved.

Even if you seem fine now, please take this very seriously. In its early stages, an MG symptom often comes and goes. But your immune system is producing an antibody that can be extremely destructive. Eventually it comes and stays. And then it progresses.

Note that there is no real difference between ocular MG and general MG. It's just a question of where your symptoms appear. It is exactly the same autoimmune disease involving the same antibody and the same disease mechanism. MG usually begins in the eye because the folds on the muscles there are smaller and contain fewer AChR receptors. That makes them most vulnerable. Not to get too technical, just know that most people with ocular MG, though not all, eventually experience symptoms in other muscle groups elsewhere in the body.

Listen to your doctor and take your meds religiously. You will usually begin with a few daily doses of pyridostigmine which will usually control your symptoms as they appear. You may also be prescribed prednisone, usually for just a short term. Prednisone is a very effective steroid with a laundry list of long-term risks.
Ultimately, if your MG progresses according to pattern, you'll get a medicine that suppresses your immune system and reduces the production of the bad antibody.

All of these medications are powerful and have sobering impacts on your body. But AChR Binding Antibody can cause irreversible damage to the neuromuscular junctions, resulting in permanent and progressive muscle weakness. It is a serious disease that requires an aggressive treatment. Newly diagnosed people with mild symptoms often fail to understand the seriousness.

If you're reading this, you are in the right place. Myasthenia-gravis.com contains a wealth of information you will find nowhere else. Your doctor does not have time to tell you everything you will need to know. Learn everything you can about this new passenger in your body. MG is not a death sentence, but it is usually a life sentence, so try to get comfortable with it. Best wishes to you on the interesting journey you are beginning. Your life will be different than what you expected, but there is no reason it cannot be wonderfully happy and rewarding.

What this person just said is very true. So please don't give up, Deb. MG is becoming more well known and they continue to develop new treatments for it. Just get a good doctor who will work with you.

Hi Deb, are you just being diagnosed with myasthenia gravis? I was diagnosed almost 4 years and those are the exact symptoms I had along with other ones. So they're very much not unusual. And you can also have generalized myasthenia gravis and ocular myasthenia. I have generalized but I also am having a lot of trouble with my eyes even 4 years later. As you may know it is a snowflake condition so treatment is unique to each personl. Recently I had I gotten double vision suddenly which I hadn't had since I was first diagnosed and but the eye doctor was aware of all this and was able to give me a prism. So I still have double vision when I take my glasses off but I have the prism my new glasses in so I can only see one of everything with my new glasses. I will continue to offer any support. I can just know that this is not an impossible condition to work with, but it is unpredictable and it is uncomfortable as far as trying to accept it. But they're getting more and more treatments and ideas out there so be patient with yourself and try not to get into too much fear or despair.

Achr is 14.5