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I’m Dr. Thomas Larsen. No, I’m not a medical doctor. My PHD is in Aerospace Engineering – I’m a rocket scientist, and I have an autoimmune disease called Myasthenia Gravis (Grave Muscle Weakness). I was diagnosed with MG in May 2008, when I was a month short of 67 years old, and have ridden the MG roller coaster ever since. It started with four episodes of difficulty speaking. I went to the emergency room, where I was admitted and given CT Scan, MRI, and MRA of my brain, which were normal. The Tensilon Test was administered at 7am when I was rested, so it was inconclusive (they should have administered it at 7pm when I was exhausted). Blood tests sent to the Mayo Clinic showed my Acetylcholine autoimmune numbers were so high they were off the charts, and suggested a thymoma (a suspected tumor on my thymus gland). I was diagnosed with Myasthenia Gravis and started on 60 mg Prednisone and Mestinone as needed. A PET scan showed no thymoma, but I had a thymectomy at Georgetown University Hospital in June 2008. Difficulty swallowing and general weakness progressed. On my birthday the end of June I could neither chew nor swallow my food nor blow out the candles on my birthday cake. On July 15, I went to the old Walter Reed Army Hospital in Washington, DC, where they admitted me and immediately began three days of Gammagard Intravenous Immune Globulin (IVIG) treatments. My strength returned, to the point I was able to take my wife to Seattle and Victoria, British Columbia to spend our 36th wedding anniversary at Butchart Gardens on September 30. I returned to Walter Reed for a second round of IVIG treatments in November 2008. Some time after that they prescribed Cyclosporine to replace the Prednisone. That was a complete disaster, as every low-pressure weather front that came through caused me to howl in pain, like a diver with the bends. They weaned me off Cyclosporine by the end of June 2011. In July 2011, after having a hip replacement, I suffered a Myasthenic crisis (they had used a muscle block anesthetic, and Levaquin to treat the hospital-acquired pneumonia) and spent 35 days at the new Walter Reed National Military Medical Center at Bethesda, MD, 22 days in ICU and two weeks intubated on life support. In response to the fervent petitions of my wonderful prayer warriors the Good Lord finally carried me out the other side of a very deep valley. Every member of my family was at the hospital at some point to lend their support. My wife, Frances, and daughter, Kristin, were at my bedside every day. Our other daughter, Dr. Catherine Larsen Coley, with lots of experience in the ICU at Children's National Medical Center, was especially helpful in communicating with my medical team. Our oldest son, Rev Eric Larsen accompanied me to the hospital and stayed the first night. Our youngest son, Brian, visited often.
As soon as I arrived at the new Walter Reed they gave me three days of IVIG treatments. The Carimune brand IVIG burned my kidneys, and it took the doctors five days to get them working properly again. I was intubated and on life support for two weeks, so I had to try to write on a small white slate, but at times I was too weak to raise my hands from my side, so my daughter would have to hold my hand as I attempted to write to communicate with my family members and doctors. I then had five days of plasmapheresis, which seemed to help a lot. Eventually I was extubated and placed on a BIPAP breathing machine. After returning home I had difficulty raising my arms and controlling their movement. When I tried to eat peas with a spoon, they flew over my shoulder, so I went back for three more days of plasmapheresis, which seemed to solve that problem.
Soon after that the doctors prescribed Azathiaprine (Imuran) as the non-steroidal immunosuppressant to replace Prednisone. So far I have tolerated that. In late May 2014 I had to go back on 20 mg of Prednisone in addition, but am now down to 5 mg per day, the minimum recommended by Dr. Ted Burns at UVA in Charlottesville, VA.
Now I try to live each day to the fullest, lead the cooking crew most months for our church Saturday men's breakfast, and collect antique mechanical music machines, and am active with our northern Virginia MG Support Group. My greatest joys include my wife, two sons and two daughters, their spouses, and our beautiful four year old red-haired identical twin granddaughters, two grandsons three years and two years old, and a new granddaughter born in May. I'm living with adversity but giving thanks for my many blessings!
I am excited to be supporting the Myasthenia Gravis Foundation of America (MGFA). In 2013 we formed this walk team which raised over $5000 that year for research leading to a cure. Dr. Daniel Drachman at Johns Hopkins University in Baltimore, MD made great strides toward a cure with that money. In 2014 we raised over $9200 and I was named the MVF - The Most Valuable Fundraiser at the 2015 MGFA national conference awards banquet. In 2015 my team raised over $10,000. In 2016 my team again raised over $10,000, bringing our total raised to over $35,000. Now we're off and running for 2017! A tremendous thank you again to all our generous donors! The MGFA is the only national volunteer health agency in the United States dedicated solely to the fight against Myasthenia Gravis. MGFA is committed to finding a cure for Myasthenia Gravis and closely related disorders, improving treatment options, and providing information and support to people with Myasthenia Gravis through research, education, community programs, and advocacy.
Please register to walk with us and/or make a tax deductible pledge to help us reach our goal! I would be honored to have you as a member of our team. Together We Can Make A Difference!
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