I don't want to write a novel here, I just hope that like an ad for a lost dog someone may recognize the picture and help me get home...so to speak. I feel doctors and everyone has essentially left me to my own devices. I have been diagnosed with fibromyalgia AND epilepsy and I know they are wrong but what I have I don’t know. I know it is genetic, all of this has happened to my sister too and from some clues we determined it must come from our mother's side.......I was never normal my parents damn near made me toxic with Ritalin trying to force me to act "normal" I always had tummy aches and ear infections, constant little problems, then the pain started in my back and body and by 22 I was having debilitating headaches.....in my middle 20s a flashing light began in my left eye and is with me still. Then at 29 I had my first seizure....no one even believed me (except my sister) because I was home alone but I knew......I knew! Then it happened with my husband in bed next to me.......I "awoke" to him FREAKING out and the paramedics asking me questions. I began to have them regularly when ever I fell asleep and I am now on Dilantin three times a day......My balance is bad, I get headaches very easy and quite a lot....I feel pain in any bone that gets pressure, my muscles ache and hurt with little effort, I get strange sensations and whatnot....my sister too but she is also almost completely unable to carry a baby...she managed one living child through tries too numerous to count, all others miscarried...mom had problems too. Sometimes I have very mild subtle hallucinations, like spiders which are not there when I try to really look at them or night terrors. God have mercy on me and my poor sister we don't even know what we have.....we don't know what is going to happen to us..or our children. What’s more no one seems to care or understand. Does any of this sound familiar to anyone???? Anyone have a clue what we may have been born with?

this is probably a dumb question, but have you seen a psychiatrist in addition to the "specialists" who are treating your fibromyalgia and your seisure disorder? (i stress "specialists" because your symptoms are serious enough to warrant referral from your primary care or general practice or family dotor). hallucinations can come from meds; they can also be a serious symptom of other things best diagnosed through a full work up by a mental health professional, taking your full medical history, social history, family history, and medication history. i know your are suffering greatly. i can "hear" it in your writing. please devote care-time to yourself to whatever extent you need in order to get a full diagnosis. i am curious why you don't believe your diagnosis of fibromyalgia; but since you don't - find a good endochronologist who can do the tests. while fibromyalgia is still sometimes difficult to difficult, it has come a long way over the last two decades in terms of understanding it as a real condition. at one time, it was thought to be just a part of depression and was dismissed by doctors. get a good group of dotors, preferably who practice in the professional buildin of the medical school closest to you. while all good dotors are expected to keep current with advances, the ones in the medical schools are REQUIRED to. good luck, my friend. i hope you can find a good outlook and take at least a few of these suggestions. i can't be ALL wrong >smile<

Thank you but I have seen mental health professionals because when I first started seeing doctors they all thought I was just crazy or depressed. I have seen specalists to a degree, neurologist of course and Reum. Some others...the reason I know my sister and I do not really have Fibro is because I have done so much research, almost no one even believes Fibro is hereditary and obviously what my sister and I have is for one...Fibro isn't supposed to cause seizures either and we both have them....we both have pretty much all the same exact symptoms right down to the age they came on. We even both see the flashing light in our left field of vision. We have slightly deformed spines and narrow sinuses..I had my daughter checked at 2 and her spine is deformed as well...whatever is wrong it is in our geans .....

wow that has to be really extremely difficult to have to deal with.quite an array of the freakish stuff there.the fact that you AND your sister are having very similar symptoms could suggest some genetic link or some autosomal dominant type of genetic condition going on.i just wanted to ask a couple of questions if thats okay?have both of you ever had any type of MRI,either with or without contrast?if so,were there any unusual things at all in your reports?have you ever consulted an actual neurosurgeon about this stuff?NSs are just so much more knowledgable when it comes to brain/c spine areas.what types of actual testing have the both of you had thus far?how long ago if any were done?have you two ever seen a doc together to discuss your symptoms?my best suggestion to the both of you at this piont really would be to get to an actual university type teaching hospital if possible.even if you have to drive a bit to get there,it would re4ally be the best possible place for the best shot at the proper Dx for you.they approach things a bit differently at the teaching hospitals only because they ARE a teaching hospital.this was where i ended up goin after i was Dxed with having a freaky little glob of blood vessels within my spinal cord.this was the only doc who really understood everything about these little SOBs.the other two NSs i had seen didn't even bother to tell me thatthis glob had actually bled twice on me,in my spinal cord.

i just think being in that type of setting and having the ability for them to be able to actually call in,pretty much on the spot in some cases,other specialists that are right there is really a huge benefit to you,they could also do a study on your genetic make up for any odd similarities between you and your sister.this is what i would seriously do if i were in your shoes right now.i just think this would offer you the best possible chance at really finding out what the heck is going on with the both of you.

my youngest son was also at the same university hosp a few years before i was with liver failure and ended up needing a transplant there.the thing was,he neede soo many different specialists at that time and they were all just a call away for his doc.my son had five 'teams' of various speacalists all working with him to find out all we needed.it was amazing really.this was what really made me want to go there when i was Dxed with the cavernoma in my cord.just that very specailized care he recieved.i got the same too when i needed help.they just really do like to see the more obscure types of problems and also have the ability to really get the best types of docs to try and find the proper Dx.these types of hospitals are where people who have had really difficult times in trying to find out whats wrong with them go to as the "last resort" in some cases,so they do see the more stranger side of medical conditions.this is what i would do.i wish you lots of luck with this and hope you both can gain some peace of mind with some sort of actual Dx or explanation for what you are having to go thru.please keep us posted on what you find out,K?Marcia

hey unheard,you still out there?just wondering how things are going,thats all.Marcia

Unheardof, we have a lot in common. I too had unexplained tummy pain and earaches as a child. I have a question about your hallucinations. When you "see" these things do they turn out to be real objects just preceived differently by your brain at first? For instance I will jump because there is a "lion" in my bathroom and then realize it was just an orange towel draped across tub. Or I will "see" a dog and it was really a plant but my "first image" of it is so clear I could tell you what kind it was. My doc says that these are not true hallucinations as they are real objects preceived wrong.
I too have had diagnosises I believe to be inacurate. I have been told the odd sensations in my head are either partial complex seizures or migraines. I have been to soooo many docs in the last 4 years I have lost count. Currently I have problems from my ear troubles as I cannot always feel when I have an ear infection. In march I developed mastoiditis (an infection of the mastoid bone behind the ear) and have been on iv antibiotics. Waiting for infection to clear up enough to have surgery. Since my illness began I have wondered if my ears have been my problem all along.
I don't know if I have seen your lost dog or not but he sure looked like the same one, hehe (must always keep a good sense of humor or go insane.) Anyway, hope to hear back from you.
Laura

Yes sometimes it does seem to be that I do just see things incorrectly but sometimes it is more an "out of the corner of my eye" kind of thing. I noticed years ago that if I saw a picture or scene with a lot going on in it I could not make sense of what I saw right away and others seemed to be able to. The other day I was in my kitchen and I was home alone and I swer I saw a blond woman out of the corner of my eyes, standing in my living room.I jumped and turned twards the living room and ther was no one there but the vision was so realistic that I knew it was a woman and she was blond. I knew it was not real but it made me so nervious I had to call my husband at work and talk to him for a few minutes so I could calm down....seems I will hallucinate easily too because when they gave me Ambein to make me sleep I stayed up half the night hallucinating my butt off. My stuffed animals were moving and my houseplant was crawling up the wall, lol. Was very interesting but did little to help me rest. As I do believe in the spirit world these kinds of things are rather frightening for me because if I am seeing things or hearing things my mind always asks....is it just in my head or is it paranormal? I get very nervous at night. I do realise I am just having sensaions from my overactive brain, I'm not nutty but it just gives me the creeps ya know. In the dark te flashing greenish light in my left feild of vision can really annoy me too.....we started sleeping with a very low light on and that made it not keep me awake anymore.
These things sound so strange and people tend to dismiss or make assumptions about things they do not understand, I was treated like I had a mental health problem for so many years even though everytime I ended up in an ER saying I had a problem they found something....I never went to a doctor complaining of a problem and had them say I was just fine. It took me having a grandMal seizure, bleeding from my mouth and peeing on myself to get people to take me seriously and even then most doctors treated me as thought either it was a "suedo seizure" from anxiety or I was doing something to myself to cause it...even though my sister was already having them for a few years at that point. When I went to a neuro and she did an EEG and then told me I did indeed have a seizure disorder of some kind and that it was coming from somewhere in the back of my brain...THEN I was considered to actually have a physical problem. Then my husband cried because all doubts were removed. Even still my friends don't get it...they hurt my feelings all the time by telling me "oh you're fine just go get a job and start driving, stop making excuses" The meds that control my seizures have distroyed my memory and taken away all my creativity and it really hurts that no one understands what I feel. They think since right no I am not hving seizures so far I should put it behin me and get on with my life......one of my greatest passions in life was writing and now I can barely make a three line poem to save my butt. It's heartbreaking....I'm sorry I do not mean to ramble on so much. I thank you for answering my post, it sounds as if we have much in common but we may have diffrent disorders or what have you...have you had an EEG? Well take care and thanks again..

Thank you Marcia that is a very good idea...I have tried to get my ister to go to a doctor with me but she wants to see who see want to see..I di try going to the same guy as her but when I later asked him why he was treating me and my sister for the same exact condition and she got pain meds and I din't he tol me I had to go to someone else. He claimed he was not going to be able to treat me because I refused to take depikote.......interesting how he says this right after I ask him this not the day I refused to take the meds. Anyways Yes I have had a neurologist do tests (EEG) and I have had MRIs done with and without contrast...one MRI was done right after I had a seizure and they said my Ventricals were enlarged but they didn't know hat that ment. Ventricals are the spaces in your brain. The other MRIs and CT scans they said were normal. I admit I do not see my doctors like I should but I am so sick of doctors and there opinions that always seem to be wrong.I am sick of being treated like a non person and I am tired of always being sent out of town to see doctors when I cannot even drive myself there. I do not drive because of the fear of seizures is compounded by the fact I have Post Tramatic Stress Disorder with traffic because I was in a five car pile up when I was pregnant with my daughter. It's just all very hard for me to keep up proper treatment or whatever...I am also somewhat poor because my husband is the only one who works. I had to finally give up working because I just didn't have the strength or energy to work and be of any use to my family. That and too many issues would sometimes get me fired.....taking too many sick days or being lat too often because I was having a very hard time getting moving in the morning or whatever.........it was all just too much or me to handle anymore. Well thank you for replying to my posting......Thanks for asking how I am I hope you are well...I am good for the moment. No too much problems lately cept for alot of back and neck pain. Take care and talk to you later.

I have had several EEGs, even a 5 day video one, but it never showed up. I did have small sensations during that time. Sorry to hear you have had a grand mal, very scary. I had them as a child but quit by 18. Back then I had abnormal EEGs but have since been normal.
I see an ENT on 29th to evaluate me and he will be the one to preform the mastoidectomy. I am frightened about upcoming surgery. Will discuss with him if my other problems could be ear related as I have loss some right eye perifial vision. I know I have cysts in maximal sinus but docs have told me these should cause no problems as many people have them.
I too see things out of corner of eye but think that is due to loss. Have you had a neuro-opthamalogist check your vision? Would be a good idea as regular eye docs didn't find it.

My sister's EEG was inconclusive but mine was quite clear. I mean the neuro looked at the results for all of two seconds before saying I truely had Epilepsy or a Seizure disorder......however you want to put that. Why some people show nothing even though they have seizures I do not know but it happens.....I am grateful mine showed something clear because that also gave validity to my sister. Years ago I did not have seizures but I had migrains so bad thy took away my birth control pills and sent me for a cat scan right away. they were afraid I would have a stroke or something but it came back normal.

Oh and no I had a regular opt check my eyes, and about your surgery don't be scared you'll be ok, I know it's always scary when you have to go under but they do that kind of surgery alot it's common so it's one that should go really smooth. You'll be ok I'm sure. Be positive! :)