Hello,

I have been in "limboland" for about 4 years now. It all started after I had a complete hysterectomy in 2003. My body just seemed to go in a complete frenzy. I know they say that after a hysterectomy it takes a while for you to recover. But this was different.

I have always had frequent migraines (since being a teenager), but since 2003 those migraines became more frequent and then I began having daily headaches. My body became completely fatigued. I mean I began sleeping 15-20hrs daily. This was way after my surgery recovery time. Up to a year after. I started having floaters in my right eye and I would get a pain above the right eye that would just kill me. My head would go numb, my left side would go numb. I would get tingles in my fingers and toes on both side of my body. My body would sting...like bee stings. It hurts to were clothes some time. It hurts to take a shower. The water beating on me hurts. Temperature is very confusing. Sometimes cold hurts, sometimes hot hurts. So lukewarm is usually were I keep it. Then in 2005, I started having seizures. My father has a history of seizures. His started when he was 36. However, he had a brain injury at the age of 18, so they assumed it was from that. Now they are second thinking that because of where the seizures are coming from. He is having approximately up to 20 seizures a night at times. He is scheduled for 4 brain surgeries starting Feb. 14. My first seizure was when I was 31. Could there be a connection? I think so. I think genetics play a big part. But my neuro won't listen. BTW, this is my third neuro, the other two say that my seizures are NES, they feel that they are pyschosomatic.UPDATE: Seizures have now been dx as pyschogenic non-epileptic-seizures. I am doing neurofeedback to help with this. So far so good.

I have had partial paralization three times. I was fully aware and conscience of what was going on around me, but could not move an inch. The first time it happened I was awakened at night, and could see the alarm clock, but could not move. I even tried to get a sound or whimper, but couldn't. So I watched the clock for an hour and 4 minutes until I was able to move again. It scared the crap out of me. That was in Sept 2005. Then again in Nov (on Thanksgiving)2005 I lost movement of the bottom half of my body. I couldn't move my legs or anything. That lasted all day. We called the neuro on call and he felt that because I was also sick at the time, that it was just a virus. No big deal. I felt it was a big deal. Then recently it happened again while sleeping. Not much I could do about it, but cry and call my neuro the next day. He said he would "note it in my chart". GEE Thanks. BTW at this time I am on my 4th neuro at Duke University Medical Center and I do like him. He says he just can't find clear enough information to dx as MS.

So there is where I am in "limboland" as of right now. New symptoms here and there, old symptoms getting worse, but the neuro and PCP (they work very well together and always keep in touch) said I should wait untill August to get some more MRI's. It wll be two years since I had my last ones. So I will be patient and wait...I don't plan on going anywhere anytime soon.

Sorry so long, but you asked for my story...lol and to be honest it did feel good to get it out.

thank you,

Missy