Adjusting To A New Life

Looking back, the first thing I noticed was photographs. My smile was crooked and one side of my face seemed to droop. I thought gravity was playing tricks on me.

The tell-tale signs I did not know about

Other subtle symptoms were chewing (I wondered why the steak was so tough after chewing and chewing... no one else complained). Swallowing, also not that noticeable: I could not swallow a jelly bean. It would get stuck in my throat. But it did not stop me from eating them, after repeatedly occurring.

I remember not being able to complete a yawn. None of these "inconveniences" were life-threatening, so why complain? I noticed that I would have great plans for the day and then fizzle out by noon. Also, walking a fairly short distance was impossible, without sitting for a bit before moving on.

All of these symptoms were easy to ignore. I was in my 60s and I was overweight. I was just slowing down. My husband and I enjoyed traveling and he was so patient with me. If we were hiking, we would stop to rest. He picked up the slack at home. He loved to cook. We were retired and he had time to shop and cook. We were managing without any thoughts that there was anything wrong with me. I was just getting old. I managed to get by like this for a few years. I turned 70 and I was just slower than in my younger days.

Symptoms on the rise

In 2015, we went on a cruise. I found myself choosing restaurants closest to our room. When we went on an excursion, I chose to stay on the bus, rather than do short tours. I had difficulty climbing onto the small bus and I didn't want to repeat this a few times. At the end of one tour, we had to walk about 500 feet to board the ship. I had to hail a golf cart to take me. I just could not do it. I started to feel that my fatigue was more than it should have been. At the same time, I did not see an urgency, so I ignore the signs and made the best of my days.

In March of 2016, my son met me to go out for pizza. We were in NYC. We had to walk one block to the restaurant. I had to stop 3 times to catch my breath and then move on. He was very concerned. I had an appointment the following week with my PCP. I told him that I thought my age and weight were pulling me down and I wanted to set a plan to improve my health. He gave me a physical with an EKG, pulmonary function, blood work, etc. Everything looked good and I decided a weight-reduction plan was all needed. I lost 5 pounds the first week and I was sure that I was on my way.

In April, my daughter was having surgery and we went to Boston to be with her. The morning we left, I had my first breathing problem. I could feel my chest fluttering. When I sat to relax, it went back to normal. That was weird, I thought. We drove 3 hours to Boston and I felt relaxed and my spirits were good. We had to climb one flight of stairs to get to my daughter's apartment. I could not do it.

After 3 steps, I could hardly breathe. I sat on the step and my daughter gave me an inhaler. After several attempts, I made it up the stairs. I could not understand what was happening. The next day we drove to the hospital where my daughter was having surgery. We were not parked far from the entrance and I could hardly make it across the street. My husband obtained a wheelchair, where I sat for the rest of the day.

A non-emergency hospital visit

My daughter successfully went through her surgery and she was in recovery. Knowing she was O.K., we went downstairs to the ER. I explained everything about the breathing issue, never imagining that all of the other symptoms were related. They drew blood, did an EKG, a chest X-ray, a CAT-SCAN and I can't remember other tests. They had me walk the perimeter and each time, I had difficulty breathing. They gave me a nebulizer... I can't remember all they did, with no diagnosis after 9 hours. They wanted to admit me, but I just wanted to get to my daughter, the original mission for the next week.

More testing, no results

My dear husband had two patients now. He cooked for us and I felt completely helpless. When my daughter was recovered and able to be on her own, we drove home. I went to my PCP to find out what was wrong. More testing with no results. I was perfectly healthy. I just could not walk 100 feet without having to rest and recuperate.

On May 11, 2016, we went to an ENT. He sent us to the hospital for an MRI of my thyroid. It was a beautiful day. We ate something at the hospital and then drove home. On the way, my husband bought a lottery ticket and asked me what I wanted for dinner. I was just tired. It didn't matter. He suggested shrimp scampi, knowing it was a favorite of mine. It was about three in the afternoon.

An unexpected loss

My husband took a short nap and my daughter called. We chatted for a while. My husband stood up to walk into the kitchen, where he fell on the floor and died. My perfectly healthy husband just died! I called 911 and they arrived quickly and took him to the hospital. I was standing alone in the ER when the doctor told me that my sweet husband of 46 years, the love of my life could not be revived.

The following days, which I hardly recall, I was so traumatized. I could hardly walk 20 feet without gasping for air. My vocal cords were so weak, I could not talk. I went through the motions with my son and daughter and to this day, I only remember the soldier handing me the folded flag. People around me were trying to help. One suggested I was just dehydrated. Another said I needed to eat. Everyone tries to be helpful.

Double-vision begins

We had a luncheon following the funeral service. I could not believe that I was seeing double. Another thing that I had been ignoring was the pain in my neck. I thought I had slept wrong and there was an uncomfortable sensation in my neck. Now it was prominent. I could hardly hold my head up. Everything was exasperated.

My doctor thought I was having anxiety. He prescribed Ativan. That only made my muscles weaker, but I didn't put that together until later. I knew I was in shock. I was living in fear and my heart was completely broken. I accepted the probability that I had PTSD and thought it would all go away. I felt like I was going to die. And I was O.K. with that.

I went to an ophthalmologist about my double vision. He said my eyes were healthy and I was probably suffering from PTSD. Then I had trouble speaking. I could not put words together. It was like my tongue was tied. I had trouble opening up a can of dog food. My arms were tired when I brushed my hair. Once I took a hot shower and I almost fainted when I came out.

I went through the summer just existing. I forgot to eat. I could not sleep. I cried all the time. I could not function. I remember not changing my bedsheets for 8 weeks. I had people helping me to shop for food and anything I needed. Because of my double vision, I could not always drive. I wasn't dealing with this thing called life at all.

An emergency hospital visit

In September, I met friends for lunch. I remember trying to hold my gigantic heavy head up through the lunch. We were leaving the restaurant and saying our goodbyes. I just wanted to get to my car, because I could not keep up this facade. I was feeling dizzy and my head weighed 100 pounds. Suddenly, my knees felt weak and I felt myself fall backward. I heard my head hit the pavement.

An ambulance was called and I was taken to the hospital. They did a scan of my head and everything was fine. When they asked about my marital status, I could not breathe. My friend told them that my husband passed away recently, A psychologist was called and he gave me information for a grief counselor. My friend drove my car home. I assured her that I was good and I went into my house. My head was so heavy. I crawled to the couch, where I slept the night.
I followed up with my PCP and he said the next step is a neurologist.

Finally, a diagnosis...

I called the neurologist and was told I could be seen at the end of December. More than two months away!!! I called my PCP, who knew I was at the end of my rope. I was able to have an appointment within a week. You must realize, by now all I was complaining about was my heavy head. The neurologist asked many questions and he mumbled, "It could be myasthenia, but I am not sure." He ordered blood work.

I ran home and looked up myasthenia. When I read the symptoms, I had ALL of them! When the doctor called me the next day to inform me that I had myasthenia gravis, I told him that I had every symptom, some of which I just ignored.

Finding the right doctor

On November 1, 2016, I saw a neurologist who specialized in MG and ALS. He decided not to put me on prednisone because I was overweight. Instead, he ordered IVIG, which I began days later. He also prescribed Imuran. I had the IVIG once a month (5 days a week) for 7 months until the Imuran kicked in.

My daughter insisted I get an opinion from a doctor in Boston. She agreed with my doctor and I asked her about Mestinon, which I had heard about. She gave me a prescription and said I could try it out. It seemed to help and my current doctor had no problem with that decision.

Where I am today

I am 77 now. I try to be positive. For the most part, I can function day-to-day. I love the good days when I can accomplish simple house chores. Then I get a day or three when all I can do is lie around and watch TV. I still cannot walk a mile and if I exert myself too much, I can feel that fluttering feeling in my chest. I know that means I have to sit and recover. I have not been in crisis, but I know I was very close a few times.

I have given in to using a walker sometimes. If I travel, I rent a wheelchair. I travel with my son or daughter who have learned about MG and are willing to help me in any way. I had to learn about MG and how to live alone, all at the same time. I sometimes wonder which is worse, MG or my grief. They both suck.

MY PCP had never had an MG patient in his 30 years of practice. He also learned along with me.