MG?

Myasthenia Gravis Central Texas Support Group

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Home Our Personal Stories This Is My Story - Warden M. Rimel

This Is My Story - Warden M. Rimel

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Senior Citizens---Beware the "Aging Process"!! It might be something else.

About three years ago (at age 75) I suddenly began to "age" with slowly decreasing strength and endurance. Eventually I was only able to work in the yard about two hours (instead of five) before I felt tired out and in need of a nap. A round of golf began to wear me out by about the 14th hole. I began to be more stooped over as the day progressed. In January 2008 I was diagnosed with severe mixed Sleep Apnea. Maybe a nearly life long lack of really deep "restorative" sleep was my problem.

To this point I had always been considered an unusually healthy man for my age. Then on April 28 I suffered a severe chest pain and doubling of my heart rate while playing golf. I drove home o.k. (not a recommended act !) , was immediately hospitalized and after many tests, on May 1st underwent a quadruple coronary by-pass open heart surgery. I made a sensational post-op recovery and was doing very well in a cardiac rehab program three times a week. But after 12 sessions I suddenly "hit a wall' and within one week I was having increasing weakness and difficulty swallowing. I was very alarmed and being a retired Psychiatrist, I began searching my books and the Internet for answers. I determined that I certainly fit the profile for Myasthenia Gravis and of all the horrible neurological diseases I could think of, I'd certainly settle for MG in a heart beat. I began having difficulty breathing and my lung capacity fell 50%. It was taking an hour to eat a bowl of oatmeal. I felt desperate and panicky.

I consulted my very fine family doctor and he also was alarmed. He found that my sodium level was low and that was my ticket into Austin's Seton Medical Center Hospital on July 10th. I was found to have pleural effusions (fluid buildup between the lung and chest wall) on both lungs, which quickly cleared up with medication treatment. But I continued profoundly weak with difficulty swallowing. On admission to the hospital I had told the doctors that I thought I had MG. But doctors are taught that "the most common things are most common" and so with a (figurative) pat on the head and a "there-there", a large number of specialists tested, scanned and checked me over and scratched their heads. No one made a definitive diagnosis. A check of my swallowing showed that I was leaking fluid into my lungs without any reflex response, so I was placed on pureed food and "nectar" consistency liquids. Finally a neurologist, in what he thought would be his final consultation, said "You certainly don't look like an ALS or MG (sic) but since you want it, I'll go ahead and get the lab test to check it out." Four days later the results showed five times the normal antibody titer and confirmed that indeed I had MG. My sense of panic and despair gave way to relief and new hope for the future. I would get to stay another week in the hospital and treatment was promptly instituted. I was given IV IG for four days and a regimen of Mestinon and Cellcept was started. Soon studies showed I was swallowing well without leaking into my lungs and I was able to get off the pureed foods and thickened liquids. My wife and I had soaring hopes for our futures. My doctors graciously acknowledged the lesson they'd learned and I went home on day 16 of my ill-gotten hospital vacation.

I am now one month into my new life style and am waiting for the Cellcept to "kick in". I've had a few bumps and pot-holes along the way but overall I'm doing o.k. as I manipulate my dosage of Mestinon in search of the best results.

Before closing I want to honor my wife, Sue, for her incredible support and care giving. She is an eleven year survivor of breast cancer, the last four plus years with wide spread metastases that responded very well to heroic treatment. But hers has not been an easy course and after the initial metastases were overcome she spent six weeks in the hospital overcoming treatment side effects that included three "respiratory arrests" that took her to the very edge of survival. She eventually recovered her strength and became a central pillar of her weekly metastatic breast cancer support group. She has overcome one brain metastasis that responded very well to a "Cyberknife" treatment a year ago. Until now I had always assumed I'd be the care taker. But we have had a dramatic role reversal and Sue has been wonderful in her care of me!! Fortunately this has been possible because she has continued to respond well to the ongoing treatment of her chronic disease. We are excited at the prospect of joining the MG support group.

Warden M. Rimel, M.D.