- CASE FILE
26 year old Marine Veteran with an unknown autoimmune disease, undianosable periodic paralysis attacks, doctors cannot find a diagnosis.
ABOUT THIS CASE FILE
My issues began during Marine Combat Training when I discovered an infection starting on my knee. After being told by the Corpsman in the field that I should just finish my training and visit the base aid station after I completed it as I was on the final stretch with only weapons training and a 10 kilometer hike left. When it was time for the hike my knee had swollen to the point that my leg was locked straight. Through the immense pain I pushed my way over the mountains and finished my hike by the skin of my teeth. I then visited the Base Aid Station where they looked at my knee, the lower ranking Corpsman stated that he was going to get me some antibiotics, as soon as he stated this the higher ranking Corpsman interrupted and stated that I would not receive any antibiotics and that "This is how he will die for his country." Being freshly 18 years old I had no idea what else I could do and began treating my self by lancing my knee and wrapping it with gauze. I then went to my school house in Washington D.C. where again I was refused treatment by the Army hospital after they called me to state that the infection was positive for MRSA. After 9 months of intense pain my infection suddenly seemed to go away, I made it to my duty station back at Camp Pendleton and at the 11th month mark my infection returned, this time right next to my S1 Vertebra. I went to the base hospital where they took another sample and began treating my wound. The infection continued to spread around my lower back, but yet the hospital never contacted me about my test results. I decided to give them a call to ask about the sample being tested, they then stated that they could not find any record of this sample being taken.
Eventually the infection went away on it's own, but the damage to my knee and back had already been done. I spent the next three years fighting for treatment to no avail. I eventually started the process to medically separate the military and was discharged with a Department of Veterans Affairs rating of 70% disabled.
After getting out I finally had the ability to utilize civilian healthcare which is dramatically better than what we recieved in the military. I started to proceed treating my constant pain and constant exhaustion when it was discovered that I had a very low level of testosterone, liver damage even though I rarely drank. The doctor tried everything should could to try and find the cause of my testosterone levels which were that of an 80 year old man. At the time I was only 22 years old. We continued on searching for the cause of my issues without any results, eventually I was offered a new job out in Colorado and moved out there.
Once in Colorado my issues began rapidly growing, I went to testosterone clinic where they tried to find the cause of my extremely low levels and they were unsuccessful, however they were able to raise my testosterone levels back to a healthy range through Testosterone Replacement Therapy. I began feeling a lot better with less exhaustion however they were still concerned about what was causing this. So I began the hunt for a Primary Care Physician, striking gold with the doctor my wife had been going to. They began running tests trying to help with my back and knee pain and working on treatment plans. Before this could all occur I was struck with a very bad infection, they kept trying different medications but nothing was beating it back. This eventually led me to a long stay in the hospital with confused doctors throwing every medication they could think at me including antibiotics, antifungal, retrovirals, and so on. Eventually saving my life not knowing how or what stopped the infection.
Over time I began getting severe muscle weakness, dropping items in my hand constantly, being unable to move fingers at times eventually building up to my second hospitalization in 2 months. I awoke in my bed completely paralyzed. I was rushed to the hospital eventually meeting two neurologists who decided that I had Hypokalemic Periodic Paralysis due to my low Potassium levels. After a few days I was finally able to move and had to have therapy to walk again. I continued to have periods of paralysis after the hospitalization due to a diuretic medication that the hospital gave to me. After stopping the medication I seemed to return to mostly normal. My Primary care then began a massive wave of blood tests, not finding anything and not finding anything in particular that could have triggered this paralysis attack. Eventually an ANA test came back positive showing that I had some type of Autoimmune disorder but they could not pinpoint what it was, even after sending my blood to the Mayo Clinic for testing. I visited a neurologist who stated that due to the lack of history of Hypokalemia in my family and the lack of any triggers that I did not have Hypokalemic Periodic Paralysis as previously thought. I then visited a Nephrologist who also determined it was not a kidney issue that cause this and that I had only sustained severe kidney damage due to the attack shutting down my organs for a short period of time. I had a spinal tap in the hospital that was negative. I had a 4 hour total spine MRI that only showed a damaged disc in my L5- S1. My Primary care exhausted every resource including a rheumatology specialist who stated that I needed to be studied as this may be a new, undiscovered condition. My files were sent to both the University of Washington and the Mayo clinic due to their expertise in DNA testing, but I have never heard back from either of them. I am currently seeing a Neuromuscular Specialist, she was able to have some DNA testing done, but the tests were all negative for known periodic paralysis issues.
I am currently awaiting and EMG test, and I am on 1800mg of Gabapentin per day to reduce nerve pain and involuntary muscle movement. My doctor has given up on finding a diagnosis and is now just working on keeping me alive and comfortable. After 7 years my health has greatly declined and I have continued to suffer with no ability to find a diagnosis. My hopes of finding a diagnosis are quickly fading and I feel that this show is my last shot at finding a diagnosis so that others possibly suffering from my possible undiscovered condition could have a better chance at finding treatment so that they would not have to suffer as my family and I have.