On a late spring day in 2015 I developed a mild cough, so I went to local outpatient clinic maybe they would prescribe some antibiotics of whatever remedies.
They took and X-ray and finally after 2 hours of waiting they told me that they will call an ambulance to take me to their main hospital for a CT scan.
Since I drove in, I said thanks, and drove to the hospital myself.
They took the CT scan and waited another 2 hours for a doctor and a nurse to show op with sad news; sir you have stage 4 lung cancer and about 6 months to live. All I could tell them; thanks no meds, I have Scotch at home, and I left. I came back for the CT scan CD next day and in the evening I flew with my son to New York to Sloan Kettering Cancer Center to see a doctor for a second opinion.
The doctor walked in after seeing the CD and said; No one will speed up your expiration day due to lung cancer; you have Thymoma, After a few months of chemo therapy my 7.5 cm gland shrunk a bit. In November 2015 I had Thymectomy.
About 2 years later, coincidently about 4 hours after a CT scan with Iodine contrast part of my face felt numb. Came home to Chicago and the hospital emergency room diagnosed me having Bell’s Palsy and send me home. A few months later, on New Year’s evening I started to slur. Went back to hospital emergency room, and again they diagnosed Bell’s Palsy. A few days later my right eye looked down while my left eye was looking forward. I thought I was turning into a chameleon. Called the hospital to make for me an appointment with a neurologist. When they call you get the appointment much sooner. I was lucky that the doctor immediately recognized my MG condition and prescribed Pyridostigmine. The eyes came back to normal. Eyelid is still drooping a bit.
For the past 3 years my MG starts in late spring as the weather warms up and I stay in the sun.
My first treatment in the spring of 2018 consisted of 11 Plasma exchanges, Prednisone (60 mg ) and 40 mg of Pyridostigmine. By fall I stopped taking Prednisone and was fine till next spring.
Next year, 2019 it started in spring again but this time it occurred 4 days after my Shingles vaccine. I never took the follow-up buster. I had 8 Plasma exchanges. However, I did take the flu vaccine and no side effects.
In 2020 it started in the spring again, so I had 11 plasma exchanges and 6 IVIG. I had no effects after any of the IVIG treatments.
This year, 2021 it started after we took a trip to New Mexico and Arizona. I presume it was the warm weather again. So I got 6 plasma exchanges and in September I got 6 IVIG treatments. The first IVIG treatment caused me to have high fever about 6 hours after treatment. Than it all went away like nothing happened. After the second treatment I did feel chilly afterwards and a bit tired the first 24 hours. No other issues after that. My primary doctor did blood analysis and strongly recommended to get off Prednisone if possible. My red blood cell count fell, as the hemoglobin and hematocrit. After the IVIG treatment I stopped taking Prednisone. I stopped taking Pyridostigmine 6 months ago. My doctor said that I should take it if symptoms return.
In the spring of 2021 I got 2 Covid19 vaccine injections and all was fine.
My MG is in the facial area, tongue gets lazy, upper lip feels numb, my uvula malfunctions and I have difficulty swallowing. Also I cannot pronounce letter S, R and CH. Thus I sound like Elmer Fudd, so I enter an involuntary dieting spree.
A few of the important side effects of Prednisone are; loss of bone marrow ability to create red blood cells and causing to cloud the eye lenses. For that reason I am going through cataract lens replacement. The deterioration of one eye, seeing hazy-dim vision, came in about 5 months ago.
In closing, it seems that IVIG is the key to my current recoveries. PS. I am a bit over 70 year old. In my case the Thymectomy triggered my MG in 2015.
|How long have you or the person that you are caring for had MG?