Hello, I go monday to Chicago for a Video EEG. I am feeling frustrated because this week my symptoms have let up and I am afraid that they will stay gone during the test. It is unusual for them to stay gone, but in the past they have let up long enough for me to think they are finally gone only to come back with a vengence. I am so afraid that they will never find out what is wrong with me. I also asked the doctor to do a brain and spinal MRI but he only agreed on the brain MRI, sigh, it is so hard not knowing exactly what is wrong. I have symptoms that vary and the doctors mostly seem to think that most is caused by partial complex epilepsy or depression. Please pray for me. Here is a list of my symptoms:
1)odd sensation in my head. (feels like a small explosion when it hits hard and the softer ones feel like a "zap, shock, or wave" Have had this for about 4 years. Can happen once in a while or every few minutes for days at a time. Hard ones make me flinch.
2) loss of balance. ( can walk into doorways, chairs or have to grab something to keep from falling over)
3) speech problems. (will forget simple words but can usually remember what they start with, forget midsentence what I was saying or talking about and I pause for long periods during talking but then pick up as if I hadn't paused.)
4) different odd sensation in my head. (started a few months back, have only had these when laying in bed about to sleep or awakened by them. Feels like a metal blind being bent the wrong way, that kind of vibration but no sound.
5) I have stabbing pains in my shins, chin, collarbone mostly but sometimes random areas. (last only seconds but will make me cryout or gasp from their intensity.)
6) vision problems ( this symptom has lasted one year, started out being my right eye was cloudy in perefial vision, worse in flourescent lighting, better with sunglasses. Wal-Mart was a bad store for me and still is as other stores. Two episodes with left eye blurring, lasting only a couple of days. The right eye never went back to normal but did improve, now only certain lighting bothers it and when I do too much like climb stairs. 3 eye docs say my eyes are near perfect, must be brain related to go to neuro, neuro says see eye doc LOL must keep my sense of humor!!!!
7) others I can't think of now but probably too minor to mention

Anyways from monday to saturday I will be in hospital and am hoping (can you believe that) my symptoms return so that we can get this figured out and I can get better. If anyone has any similar symptoms and know what is going on I sure would like to hear from you.
Thanks,
Laura

Laura, best wishes as you go in for VEEG> My son has had 4 with mixed results. He was treated for 3.5 years for partial epilepsy and then had meds removed after his first VEEG even with abnormalities seen....LONG story. New doctor is finally trying him back on meds....he went 3 years without meds.


It is so frustrating when the symptoms ease up as testing nears. Hang in there! Hoping you have the symptoms while you are in there and they can see what is going on.
IS there anything that seems to make them worse? Do all you can to try and bring them out. Sleep deprive, Skip meals, stress?
Hang in there, G

I got home today. I had some slight "odd sensations" during the tests but none of the hard hitting ones and none of the night ones. Sigh and nothing showed up on the EEG. I managed to get the MRI of my brain done right before I left. They squeezed me in for a quick 20 minute scan. I did have two of the sensations while in the machine. I have decided to just "let go and let God take care of the rest" I pray that the MRI shows whatever is going on. I just cannot deal with anymore doctors and their stupid questions. Some proffessor actually came into my room with a bunch of students and started asking me the most assinine questions and saying stupid stuff like "I bet you have a whole cabinet full of prescriptions. I bet you have so many prescriptions you had to build a second cabinet to hold them all." Man I about lost it. Is it my fault that doctors keep giving me drug after drug without knowing what is going on? Without knowing what is REALLY WRONG with me? I am not a pill popper, I try the meds and if they don't help I quit taking them. I could go on and on about doctors but I am tired after my 5 day stay and I am still trying to get the glue out of my hair and I was allergic to the leeds so I have sores on my scalp. But I will say this: Most all the people I came in contact with at the U of Chicago were kind, caring, proffessionals who made my stay there as pleasant as they could and for that I am very grateful.
GOD BLESS,
Laura

Laura, how frustrating! I would file a complaint about that professor...he might have been trying to "teach" something to the students but mostly taught poor bedside manner! It is not your fault that they do nt know what is going on but keep piling meds on you!

Hnag in there. Hoping the MRI shows something...G

Kayakmom thank you so much for your replies, I truly appreciate your kindness. I pushed to have the MRI done there at U of Chicago because it is not a mobile unit. I used to live in michigan and had a doctor there that would make me go to Ann Arbor to use their unit as he said that it was worth the drive for me to have the superior films done. He even showed me the difference between my old films I had done and the new ones and even I could see that they were far clearer. The ones done with a mobile unit were grainy. Of course that was years ago and maybe technology has improved but with having these problems that noone has been able to diagnosis I just feel better having it done on a unit that doesn't go from place to place every week. Also I think it is telling that none of the cervical MRI's I have had done on the mobile units have mentioned the "soft tissue mass" in my throat that the last one I had done at Ann Arbor did. It turned out to be scar tissue from my cervical fusion surgery and I know scar tissue does not disappear, it either stays the same or grows.
Anyway, thank you and when I get the results from the MRI I will post them.
GOD BLESS,
Laura

I got a e-mail from the neuro saying that the brain MRI was normal. BIG SIGH I am so tired of having these problems and not being able to know what it is. I give up trying to find out. I guess I'll just have to wait until things get bad enough that they can see what is wrong. I still believe that it is from my neck problems and having a narrowed spinal canal but all the neuros pooh pooh this idea and say it is not related. They won't do a spinal tap (if I am right this test would show if cerebral fluid is flowing properly)
I am teed that his e-mail just said MRI normal and if I want to see an optomitrist to go ahead (I asked if I should see a neuro-optomitrist for a visual field test) if I thought it was necessary. He didn't say what if any further testing he thought should be done.

I am so sorry that the MRI was not more conclusive! There are times when normal is like a dirty word when it does not show what is going on. A normal MRI is not that unusual for epilepsy.

Spinal tap would just show if the fluid shows sign of an infection, I think. I do not think it would show if it is not flowing properly ,though I sure could be wrong on that.

I would say it is worth seeing the neuropth, one more thing to rule out.SOmetimes the diagnosis for seiuzres is ruling out all other possibilities.

I hope you can find help soon. I know it is so discouraging to have all this go on and tests not show it!