What symptoms have you experienced?

For over a year now, I have been showing signs of an illness. I have been to my PCP and numerous specialists. Then in June, I developed symptoms that were debilitating. I was dizzy, clumsy, had memory problems, twitching, burning in my face with pain, tingling and electric shocks in my legs and feet, also in my arms and on my chest. I get numbness on the tip of my nose and on my lips. I have had to stop working because sometimes I get headaches so severe that I can't move. I started getting sick in the car and couldn't deal with too much stimuli at one time. I feel exhausted on most days. I have so much pressure in my left eye sometimes that it feels as though it will pop right out of my head. I get hot all over sometimes but then other times I feel like I can't get warm enough (W/O a fever.) I also have pain in my neck at the base of my skull. My PCP sent me for an MRI and they found a lesion om my brain and Chiari 1 Malformation, extending 6mm below the level of the foramen magnum. I was then sent to see a NL.

I am not 100% confident that my NL knows what he is doing. Yes, in the beginning the symptoms were much worse and some of them have seemed wained. He keeps telling me that I probably had encephalitis and has now diagoned me with encephelopathy (meaning brain disease.) That is a scarey and vague diagnosis. When I asked my NL about the Chiari, he said it was nothing to worry about. My PCP thinks that it is MS. I am just so frustratIed!

I have been doing a lot of research and I am starting to wonder if the Chiari is what is causing all of this. I have had an EMG (normal), for a half of an hour and just recently had a lumbar puncture. The LP came back and ruled out infections etc. So, I am again at a loss.

I am taking 300mg of Neurontin 4 times a day. It helps, but it sure hasn't taken much of the pain and buring away.

I would like to know what symptoms that you all have experienced. I can read all the medical information, but I feel more confident in the answers from others diagnosed with Chiari.



Thank you so much for the information. I can't seem to find "the list." I am so curious to see what all is on it.