Join Date: Sep 2011
Location: California, USA
About 5months ago, I woke up with tingling and numbness (like when your foot "falls asleep") from my waist down. I could not walk, and was in pain. My parents took me to the hospital, where I was seen and over the course of 3 days had an MRI with contrast, EMG, Evoke Potential, EEG, CBC blood tests. Upon examination, I could not tell the difference between sharp and dull anywhere from my waist and below. I could not feel pressure (like a sock, or a hand on my leg). Putting a blanket on would make the tingling 10x worse. I was put on Gabbapentin, and sent home, believing that this "neuropathy" would go away in 4-6 weeks time. Over the summer, I worked as a camp counselor, and through physical therapy was able to walk short distances. 6 weeks after the hospital, I still had tingling and extreme numbness in my feet, and abnormal sensation all the way up to my waist. It feels like when I touch my leg, it isn't my leg. I don't have that perception. My balance was horrible, and improved only slightly over the summer. I live close to Stanford, supposedly one of the best hospitals in the world. I have also been up to UCSF, leading number 4 in neurology. Neither hospital has a clue what is going on with me. It is 6 months later now, and I continue to have abnormal sensation in my legs, and numb feet. I developed twitching attacks about 3 months in, and have been so bad that I have been ambulanced to the hospital from a school dance. I am up to 2400 mg. of Gabbapentin, .5mg of Ativan (when needed for the attacks) and codeine with tylenol (standardized dose) for chronic back pain, that persisted and got worse since being dispatched from the hospital. The idea of a conversion disorder came up about 4 months in, and I was not happy about it. I feel like my doctors don't care, that they are just saying it is this because they can't find anything else through the tests they conducted. What is important to note is the following. - At the initial time this started, and leading up to the trip to the hospital, I had NO psychological disorders/history of mental condtions. -I was going through little stress (1 month before finals), hanging out with my friends -I had a really good group of friends, and a very supportive family - NO financial stress, no issues in the family, no issues at school. I was getting good grades. There are nights I lie down wishing I could accept CD. Looking back, doctors seem to tell me whatever they think I will believe, as long as it leads to CD. I go up to teachers, friends, parents of friends and tell them about CD and how doctors think this is a possible diagnosis. They tell me it is ridiculous! It just isn't me. I have never been a person who stresses like crazy, who sweats the big stuff. It bugs me because I'm going crazy and getting no peace of mind. I am in pain, and i go through days where my legs just stop working, or they feel weak. I can't climb stairs, there is burning in my legs. Yet, I do yoga, meditation, diet change, massage, acupuncture, sessions with psychologists AND psychiatrists. I swim when I can, but seldom do I have the strength and the motivation. People tell me that I will get better, but I feel as if I am getting worse. This whole weekend I have had horrible anxiety, it feels like I can't breathe, like my chest is empty. Doctors see that I can't walk well, that I am having trouble, and they turn me away. This is frustrating. So frustrating. And I wonder when it will get better, as now I am 6months into this mystery diagnosis. Any help, any answers, any support. Anything will help me. Stories you have, advice you can share. If this is CD, how do I come to terms with this? How do I get better? How do I believe, with all the facts and knowing who I am, that this is a psychological disorder?