Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS.

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Old 10-20-2019, 05:20 PM #1
Sparky755 Sparky755 is offline
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Join Date: Oct 2018
Location: Up-state, New York, Catskill Mountains
Posts: 3
1 yr Member
Sparky755 Sparky755 is offline
Newly Joined
 
Join Date: Oct 2018
Location: Up-state, New York, Catskill Mountains
Posts: 3
1 yr Member
Confused My journey with Myasthenia Gravis

I am hoping that I am posting properly and in the correct place. I am 66 years of age and was diagnosed with MG in late 2017. For about 3.5 years previous to November of 2017, I had attempted to seek medical advice on my symptoms from numerous healthcare providers. A was shuffled around to Orthopedic Specialists, Rheumatologists, Opthomologists, Endriconologists, Psychiatrists, and everyone advised me what they thought about my symptoms from "lazy Eye"(drooping right eye) to an internal ear problem because of my balance/walking problems that caused me to just fall over), to being "out of shape", to being over weight which caused the weakness in my muscles and pain in my joints and therefore I needed vigorous physical exercise and Physical Therapy. No one could explain my difficulty keeping, food and liquid in my mouth while eating and drinking or my difficulty with chewing, swallowing and slurring my speech. I was subjected to various blood work, drug tests, MRI's, CAT scans, and Audiology studies. You name it, I had it. Finally, while attempting to shoot clay pidgeons on a "Five Stand" at my local Sportsmen Club, when discharging my 12 gauge shotgun at the target I just lost my balance and fell over backwards. To my good fortune, I was shooting with a local ENT Specialist, who after hearing my tale of woe, asked me to make an appointment with his office. Upon his testing and examination he indicated to me that in his opinion it was not inner ear connected and he made contact with a Neurologist for me. I was examined by the Neurologist who ordered a brain scan along with a battery of blood tests. When I came back to his office following those ordered test he informed me that in his opinion I had Myasthenia Gravis. He advised me that he had only had one other patient with this disease in his 40 years of practice and made arrangements for me to see a Neuromuscular specialist at a large medical facility in New York City and ordered one additional test to check if I had a tumor on my thymus gland. Now I am on 2000 mg per day Cellcept, a tapering dose of Prednisone of 27.5 mg one day and none the next, 60/60/60 mg and 180 mg extended Pyridostigmine daily and IVIG infusion interventions when needed. I am very frustrated to say the least, I have had difficulty with dealing with the extreme up's and downs of this disease. One day I may feel relatively strong and the next day or hour I may feel completely exhausted and unable to maneuver out of bed or walk to the bathroom. All in all I am glad that my obituary has not appeared in the local newspaper. God bless all of my brothers and sisters suffering from this disease.
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