Hello all,
My wife suffers from Ocular Myasthenia. She is suffering from past 2 years. Ocular Myasthenia is an initial stage of Myasthenia Gravis (MG). People who have MG generally start with Ocular Myashenia gravis. In Ocular Myasthenia either one/both eyelids droop or the patient suffers from double vision.
When my wife had initial symptoms of MG, we took her to Eye doctor, thinking that there was some problem in the Eye. But he couldn't diagnose the disease. By Grace of God, we happened to show her to Neurologists who checked and confirmed that she suffered from Ocular MG. Various tests including ACHR tests were done to confirm Ocular MG. She was given steroids to control the spread of Ocular MG. My wife who was thin and beautiful soon became very fat due to steroid side effects. She soon started to have skin problems and other typical steroids side effects but steroids did control the onslaught of Ocular MG.
During my stay in Hyderabad, we showed it to all Top neurologists. All had same treatment though some changes in the Medicine Dosages. Steroids was the initial line of treatment and now she also started Immuno - suppressants.
Even i showed her to some of the best doctors in America, the treatment remained the same though. Research in America and other parts of the world is still going on.
We also tried homeopathy, it was of some success. We tried homeopathy along with steroids.
It is difficult to live with Ocular MG, both for the patient as well as the supporting partners. Partners especially make sure that you support the patient very well, but emotionally and physically. Emotional support is paramount as the patients are unable to live their life fully and go into depression very quickly. Preventing patients from doing physically strenuous work is paramount, as this may cause the MG to progress rapidly.
I hope some day a solution is found for this disease which doesn't allow patients and their partners to live life fully.
Thanks,
Upendra
All are welcome to share their experiences on this disease.
Disclaimer: All these thoughts and experiences are my own. I am not a doctor, and please do not take decisions and treatment directions based on my thoughts and comments. Please contact your neurologist for any treatments and suggestions.
My wife suffers from Ocular Myasthenia. She is suffering from past 2 years. Ocular Myasthenia is an initial stage of Myasthenia Gravis (MG). People who have MG generally start with Ocular Myashenia gravis. In Ocular Myasthenia either one/both eyelids droop or the patient suffers from double vision.
When my wife had initial symptoms of MG, we took her to Eye doctor, thinking that there was some problem in the Eye. But he couldn't diagnose the disease. By Grace of God, we happened to show her to Neurologists who checked and confirmed that she suffered from Ocular MG. Various tests including ACHR tests were done to confirm Ocular MG. She was given steroids to control the spread of Ocular MG. My wife who was thin and beautiful soon became very fat due to steroid side effects. She soon started to have skin problems and other typical steroids side effects but steroids did control the onslaught of Ocular MG.
During my stay in Hyderabad, we showed it to all Top neurologists. All had same treatment though some changes in the Medicine Dosages. Steroids was the initial line of treatment and now she also started Immuno - suppressants.
Even i showed her to some of the best doctors in America, the treatment remained the same though. Research in America and other parts of the world is still going on.
We also tried homeopathy, it was of some success. We tried homeopathy along with steroids.
It is difficult to live with Ocular MG, both for the patient as well as the supporting partners. Partners especially make sure that you support the patient very well, but emotionally and physically. Emotional support is paramount as the patients are unable to live their life fully and go into depression very quickly. Preventing patients from doing physically strenuous work is paramount, as this may cause the MG to progress rapidly.
I hope some day a solution is found for this disease which doesn't allow patients and their partners to live life fully.
Thanks,
Upendra
All are welcome to share their experiences on this disease.
Disclaimer: All these thoughts and experiences are my own. I am not a doctor, and please do not take decisions and treatment directions based on my thoughts and comments. Please contact your neurologist for any treatments and suggestions.
