Posted 3/3/2014 8:12 PM (GMT -7)
I was diagnosed with neuropathy, cause unknown. I had "attacks" that would leave me in elevated pain for weeks (usually about 2 months) with muscle weakness. Then go back down to lower level constant pain. I had about 4-6 attacks a year, and did notice the lower level constant pain fluctuated with my hormones and when I caught colds or flus. This went on for 15 years, since I had young children, I did not want to be addicted to opiates. I was infected with HSV2 in 2004, and my neurological disorder went nuts! I was determined to find out "what" on a genetic level, my neurological disorder was. Three years, multiple specialists & states, the best our system has to offer, all the while deteriorating. I wrote down every aspect of my life looking for a correlation. Every doctor heard my symptoms, the progression, and relying on their expertise, shrugged their shoulders. Then a gastroenterologist put me on Nexium, I had a horrible pain attack, heart racing, nauseous, excruciating, and then I urinated purple! He said "what are all your symptoms?" I described the constant pain, the now monthly (or more) attacks, muscle weakness, bowel problems, sun intolerance, sensitivity to medications, and now..urine that looks like you poured red wine in it. He put it all in a med palm device (the worlds medical knowledge) out popped HCP, a type of porphyria. It explained everything! Not just for me, who was expressing "acute porphyria", but my relatives, who all had milder, similar symptoms, minus the neuropathy. So, finding the "why" is crucial, especially if you are taking any of the medications. For my disorder, most are on the NO list, as they make my disorder permanently worse! Best of luck in your search!