Hi, I'm Ed Rodgers, a retired Navy Master Chief Boatswain's Mate (EOD/MTS). August 1st, 2003 gave me 30 years and 5 days of honorable service. I worked as an Explosive Ordnance Disposal Technician/Diver for the last 22 of those years. The VA rated me 100% disabled in September of 2003 with a broad scope diagnosis of metabolic myopathy. This web site chronicles my attempt at providing accurate information necessary to establish a diagnosis, and hopefully treatment.
This disease has essentially affected most of my skeletal muscles. My symptoms started in May of 2000 with pain in both bicep muscles. This was roughly two weeks after being put on Zocor. The day before Thanksgiving 2001 it hit my legs hard. I suffer daily from pain, soreness, mobility restrictions, and fatigue. My muscles have no endurance at all. I can walk (slowly) about 100 feet before my legs start locking up. Doing anything with my arms or hands also results in those muscles quickly reaching a fatigued state.
My doctor at the local Muscular Dystrophy Clinic had written mitochondrial myopathy as my initial diagnosis (which would make sense to me) and then scratched it for want of a more definitive muscle biopsy first. This was in November of 2003. So far I haven't had any proper testing for mitochondrial disease. Mitochondrial disease does fall within the metabolic playing field, but unique testing is required for diagnosis. Standard biopsies which are frozen and sent to a lab won't work 99% of the time.
In October of 2004 I noticed a result on the very first test I had done, which if it were interpreted today, could mean Myoadenylate Deaminase Deficiency. Another Ischemic Forearm Test would have to be done to confirm this but I haven't been able to locate anyone around here that even knows how to do the test. In any case, my symptoms fall outside the normal range for this disease, so it may only be secondary to something else. At least it would be one step closer. As of March 2008 I'm still dead in the water, so to speak. All local resources have been tapped, to no avail.
Thus far I've been diagnosed with Fibromyalgia, Restless Leg Syndrome, and I'm on Zantac for chronic heartburn/acid reflux. I'm taking Clonazepam for the Restless Leg Syndrome and that works pretty good.
Understand that in my previous line of work as an Explosive Ordnance Disposal Diver, being physically fit was a must. At one time I ran two marathons (26 miles), could squat 535 pounds, and bench press 320. At present I can barely walk at all. Any type of mild exertion, i.e. squatting down etc. can easily result in needing a wheelchair. And no I wasn't in the Gulf War. During that time I was stationed out in the Aleutian Islands blowing up ordnance left over from WWII. What is interesting to note here is that Adak Island has an EPA Superfund list of known toxic levels of contaminants about a mile long. If you were stationed on Adak and have had or are having symptoms similar to mine PLEASE CONTACT ME at firstname.lastname@example.org!
If you've found this site via a web search because of a similar experience you're going through yourself, I wish you all the best. Thanks for stopping by my web site.