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Old 12-28-2019, 04:21 PM #1
nkvntz nkvntz is offline
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nkvntz nkvntz is offline
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Join Date: Dec 2019
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Default New Member - Myasthenia Gravis

Hey there,

New member here from Quebec, Canada.

After years of tests (the healthcare system is slow here) I was finally diagnosed with ocular Myasthenia Gravis this past spring, which became the generalized form this fall and I suffered my first myasthenic crisis shortly after in November.

I wasn't given much information on the disease, so looking forward to reading/hearing others experiences with this disease / coping methods etc.

Very thankful to have found this community!

If you have any advice please feel free to share!
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Old 12-28-2019, 08:35 PM #2
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kiwi33 kiwi33 is offline
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kiwi33 kiwi33 is offline
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Hi nkvntz

Welcome to NeuroTalk .

I am sorry to read about your myasthenia gravis. Its forum here (https://www.neurotalk.org/myasthenia-gravis/) is very active so I am sure that if you share your story there you will gets lots of support and good ideas from other members.

You can also use the Search option (https://www.neurotalk.org/search.php) to find threads here which may help you.

All the best.
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Old 12-29-2019, 04:29 PM #3
levisanz levisanz is offline
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levisanz levisanz is offline
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I have a feeling that My MG journey may have began as far back as 2012 when I tested ANA positive.

I was attending Rutgers and decided to visit the clinic because I was not feeling well, I thought it was MONO. After much bloodwork, I was told that I may have something rheumatological and that I should see a Rheumatologist. When I saw the Rheumatologist he asked me if I was experiencing any pain in my joints or back pain - being a dancer, I always experience pain in my joints. I told him no, and he said I was fine and sent me on my way.

Fast forward to Oct 2016.

I was into my second year teaching dance at a public school in Brooklyn, when on the morning commute drive I began to feel sleepy and dizzy. It felt as if my eyes wanted to close and stay closed forever and I just wanted to sleep. I also had this feeling of having a hat on my head that was a bit too tight. I drove back home and my wife drove me to the emergency room. I was there for two days and in the end I was told that I had Status Migrainosous. I was prescribed Amitriptyline and was sent home. I was bedridden for another 10 days before going back to work.

From that time on, I was stuck in this pattern where I worked for about a month before getting sick and having to stay home for approximately 2 weeks before going back to work and repeat the pattern over and over.

A year later, I moved to Rhode Island and after a few months I found work teaching at a childcare facility. Not too long after the cycle of sickness returned but this time I was at work for about 2 weeks before having to stay home for 10 days, over and over again. After a year of this I decided to go on FMLA so that I could finally get to the bottom of what was happening with me.

During those months on FMLA I felt like a block of stone, day after day as some of my flu-like symptoms began to subside due to the fact that I was finally allowing my body to rest properly, what was left was a constant swaying/rocking whenever I stood or sat unsupported. The only thing that helped was laying down or reclining. Also, due to the constant rocking/swaying, I would become extremely fatigued and needed to lay down and or sleep for awhile. I could not stand in lines, sit to eat or just stand and talk to someone without needing to either walk around or hold on to something.

In June of 2019, I had back to back appointments at Brighams and Women's Hospital. Since driving was not an option, I took the train both days. On the first day when I returned from Boston, my wife was waiting for me at the train station. To get to the parking lot I had to use a crossover walking bridge. Just for a little exercise, I decided to run up the three flights of stairs which wasn't difficult for me to do in the past. At the top of the second flight, my legs began to loose strength and I could barely get to the top of the third flight. I bumbled across the bridge and walked very slowly down the other end of the stairs, holding on to the rails - Initially I thought that I was just out of shape. The next morning my legs were sore but functional. I walked to the auto shop because I needed to have my car that was deemed a total loss, towed back home...it was about a mile. In the afternoon I took the train to my second appointment at Brighams. I rested on the way there. Once I got to Boston, I took an escalator up and when I got to the top, I took approximately 4 steps into the terminal when my legs decided to quit - they would not move. It was as it the communication between by brain and my muscles were severed. I didn't know what to do. I was standing still in the middle of the terminal, not moving, trying to think my way out of the situation. I had my phone so I could call 911, I could ask someone for help. I tried to move my legs again and they started moving but intermittently like there was a short in the wiring. I was able to slowly get myself to the neared bench and sat for a while. After a few minutes I was able to stand and slowly get myself outside to catch the Uber to my appointment. From that time on my legs would never feel the same again.

I saw several doctors of varying specialties - Rheumatologists, Endocrinologists, Disease Specialists, Vestibular Specialists and of course my Primary Physician who was just as much in the dark as I was about what was happening to me because all of my testing kept coming back normal. Finally I saw a Neurologist at Brighams and my AchR blood work tested positive for MG.

Today my days are measured by time. I still rock and sway when I sit or stand, its hard to keep my head up sometimes, I have blurred and double vision when fatigue sets in, I get hoarse and/or slurred speech when I talk too much, I walk with a cane and can only walk as far as the library that is several feet from my home. I have to always take a nap - I have to always rest. I try to keep myself busy with minor house and yard duties, cooking and writing. I don't know what I would do if it were not for my wife being there for me during the tough times and the not so tough times.

These days I always have to stay close to shore - if I go out too far, which I have done on a couple of occasions, I'm not going to have the strength to get me back home. On the other hand, I feel that this new friend of mine may provide me with an opportunity that I have yet to discover. I danced professionally for most of my life and have been able to share my experiences with children and adults alike. Maybe once I learn how to share time and energy with my new friend, he will help me find the time to share my energy with others.

My advice is to remain patient, do what you can, rest when you can, don't be hard on yourself. Chunk your tasks and relish in the little things that you are able to accomplish.
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