| I just happened upon this website and for the first time since my OT onset seven years ago, I am able to "touch" someone who knows how I feel. I know exactly when my problems started and how -- I'll try to be as brief as possible, but there's been a lot of ups and downs in these past seven years! I came in contact with a child in my child's kindergarten class who had "Fifth Disease". If you know much about this, it is a little viral thing small children frequently have without any problems -- a little rash on hands and face, a little bit of fever a few days then it's over. It's name "Fifth Disease" has something to do (I believe) with it being the fifth most identifiable rash ??? Anyway about a week after coming in contact with the child I had a rash that broke out only from my knees to my ankles, followed by extreme pain in my elbow and knee joints only. This lasted a couple of weeks, then followed with a rash on my face for a few days. The only other symptoms I had were extreme fatigue. I saw my doctor at the onset of the rash and blood work was done to determine that there was a parvo virus present. Within a couple of weeks the pain in my joints was gone, the rash went away, but the fatigue continues....seven years later. I started having problems standing without support, and my legs seemed to feel like no muscles, just jello. My physician referred me to several other doctors, including three neurologists at separate facilities -- none could seem to reach a diagnosis. They were very suspicious of MS at the beginning, but blood work ruled that out. Finally after nine months I was seen by a neurologist at Mayo Clinic who did the studies and determined a diagnosis of Orthostatic Tremor. For the past seven years I have continued to see a neurologist and have taken many different medications including Clonazapen, Neurontin, Tegretol, Depakote, Mirapex, and maybe some others. Clonazapen and Neurontin have provided the best results; however, I had to discontinue Neurontin because it made my feet retain lots of fluid, something I had never had problems with before. Personally, I believe I did better on Neurontin than all other drugs until this problem developed. I am now on Clonazapen again after the most recent attempt at a new drug, Lamictal. It just didn't seem to help the tremors. Life for me did a complete turn around seven years ago. I've always been a high-energy person who never would even consider lying down for a rest during a day -- only night time was bedtime for me until then. I did yard work, house work, cooking, helping others, playing with my child, even jumping on the trampoline and playing chase, etc. All of those days are behind me. I now have help with my housework, cannot do any yard work, cook sitting on a stool or more often pick up something for meal times. I'm tired all the time. I catalog order for shopping -- cannot stand long enough to do any shopping. My groceries are purchased a few items at a time, preventing me from having to stand in line at the checkout -- also I choose a grocery store that puts the items on the belt for me; I cannot handle picking up items and then writing a check for the items --- my once perfect penmanship is almost unreadable. I avoid any lines, and I'm sorry to say the disease seems to be progressing worse as time goes on. I'm reading the site to find out if there's any information about foods, etc. that might help -- I'm already onto this blueberry thing. I'm willing to try anything to get some qualilty life back. Sincerely, Barbara |