Join Date: Jan 2007
New to NeuroTalk and need help...
Hello to all,
I am new to this site. I am a member of BrainTalk and have posted there, but to no avail. People there have given me much support and many ideas, suggestions, etc. But hopefully some people here can help, since my problems are neuro related.
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 had always had frequent migraines as 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.
I have been dx with Depression, CFS, Fibromyalgia, RLS, PLMD, NES, Migraines, Lordosis, Congenital Spondylolisthesis, Chronic Sinusitis.
All MRI's and CT's have been normal other than ones done for sinusitis. They state that my frontal and maxillary sinuses are full and I need sinus surgery. I had sinus surgery done in 2000, but only for the maxillary sinus' so the ENT feels that it is necessary that I do both frontal and maxillary now. (ouch)
I have had temporarily paralysis twice. 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. Than 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. Since then, it hasn't happened while conscience.
I have both partial and GM seizures. My dad has been dx with ES. He doesn't have a tumor or anything, but because he has had so many seizures in the last twenty years, he has major scar tissue that needs removed.
I did have an EEG done back in 2004, it too was normal. I also had an LP done in 04 that was normal. My first neuro dx me as "probable MS". I am not sure if that dx still stands with my new neuro.
I have been referred to an Epilepsy clinic at Duke in NC (where I live), but can't get in until May 1. My seizures are averaging about one or two every other week. My primary care dr. is great. He has checked all my hormone levels and other levels he could think of.
Currently I am taking Multivitamin, B-12, B-6, B-2, Complex B, Vitamin D, Vitamin E, DHA (Omega 3 -Fish Oils Purest Form), Pedolux (Butterburr Root Extract for Migraines), Folic Acid - All taken in the morning
In the evening I take Topamax, Seroquil, Diazepam, Verapamil (for daily headaches.
I know this is a lot to read and take on. I guess my questions are...has any one experienced any of these symptoms? Does anyone of any suggestions one what I should present to my neuro? Could my migraines be causing the seizures? Do you think my seizures are ES or NES? What does the FM/CFS, if anything, have to do with all of this? Giving your opinion, ideas and suggestions would be much appreciated, regardless of the harshness that they might be. There hasn't been anything out there that I haven't heard from the doctors. However, keep this in mind. In the latest Fitness magazine, it has been shown through a study that 1 out of every 4 women are misdiagnosed who have an autoimmune disease because doctors report them as chronic complainers. Not saying that I have an autoimmune disease, but saying that my neuro puts me off as a chronic complainer when my symptoms are very real. Sorry, just had to get that off my chest.
Thanks again in advance for any help...