Guest guest Posted September 11, 2006 Report Share Posted September 11, 2006 --- Good Morning Dorothy, My name is Candace and I'm 40yrs old mother of 4 grandmother of 2...I used to come to this site on a regular basis but haven't visited for quite sometime....today I decided to pop in and your post was one of the first ones that got my attention...(no offense to anyone else). The reason being is that...about almost 10yrs ago after having been diagnosed with sarcoids 2yrs prior ...I could be wrong on the years all I know is that its been a long,long time dealing with this.... I too suffer with what I have been told is seizures....when i first started having them, they would start with me feeling lost,confused and just staring into space.....i was admitted to the hospital for testing cause the doctor saw me go through an episode in his office...and thought I may have a tumor on my brain....after all testing thank god it was not a tumor.....the episodes started coming regulary while i was in the hospital....so they put me on tegretol a seizure medication....and said I was experiencing front lobal seizure or something to that affect....the tegretol would make the episodes come more instead of controling them so they put me on dilatin..... since then I have been told that i have left focal seizures ...grand mahl seizures.....frankly i dont think they know what is wrong with me.... when i go through I know when its coming .....i get this feeling in my head ...like pressure on the left side sometimes right in the front over my eyes, or at the base of my neck(which is very scary to me because the feeling at the base of the neck is more profound than the others.....) my left arm starts to jerk as well as my leg.....i get confused and with a bad one my tongue gets all twisted and i start sounding like what my kids call a duck...lol got to love those kids huh...they do keep me going....my daughter has told me that i passed out with some I dont remember.....but like you I can be going through one and not be able to speak...hear everything thats going on around me ...come out of it and pick right back up where i left off in a conversation....im still on dilantin 300mg....although i'll admit that i take them when I feel necessary...not a good thing but frankly Im tired of dealing with doctors that want to make me think that its all in my head...... recently I started experiencing real serious dizzy spells...ones that would have me grasp on to something for dear life because it felt like the room was going to give out on me.....not the floor but the entire room.....I keep having them one night in here while everyone was sleeping so I had to wake them up and let them know that i needed to get to the hospital....because this was something new that I was going through and it scared the crap out me... along with the dizzy spells i started to shake like crazy couldnt stop shaking...... when they got me to the hospital....they had me laying on the gurney for I dont know how long before someone actually came to see whats wrong....oh they gave me something in my IV to calm down the shakes....then put me up against the wall and basically forgot about me until my man got to the hospital and started asking whats what.... while laying there i was still having the dizzy spells ....they did take blood but no one spoke to me about anything until I said i was ready to go home ....then all of a sudden the doctor comes around to tell me that my dilatin level was low.....I asked him if they check out my sarcoids in the blood test and he said that there is no way to check out the sarcoids in the blood...is that true...I thought there was a blood test that could be run to check out some level of blood cells related to sarcoid............anyway you are not alone in this shaking seizure epic of our lives.....I hope that you find better medical attention than i have and that all works out for you....everything that you typed I have and still experience...I dont like going out with my family because before the trip ends Im going through a shake seizure what ever label they put on it .....keep the faith....and dont let them tell you its in your mind cause its not. Its not easy but I tell myself that its mind over matter....and I end up controlling most of the episodes with my mind because I refuse to let it take me down ....I will pray for you and keep in touch.....love and hugs always........... Rage against the dying of the light...... In Neurosarcoidosis , " Dorothy Herrmann " wrote: > > Hello, I am new to this group and looking for help. I have had medical problems for the last ten years. First it was weakness and tingling in arms and legs, followed by severe balance problems, chemical sensitivities, etc. At one time they thought it may be " MS " , then ruled that out,as well as just about everything else. > > About 4 years ago things got worse, and I occasionally had weird, strong tremors of an arm or leg, and on a few occasions, whole body seizures. Then last spring I started having what the doctors are calling " a seizure-like disorder " , and these spells started coming every other day, then every day and within two weeks they were coming 3-5 times a day. After three months I got some relief from a natural health practicioner, and they settled down to 3-5 times a week and were much less severe, but recently they have become worse again, and I am trying to find some direction. My sister said she saw a program on neurosarcoidosis that sounded a lot like my problems and so I would like some input from those familiar with the problem. I would especially like to describe my " spells " and see it they sound like the seizures that sometimes accompany NS. > > My " big " spells usually start out with a feeling of tremoring inside, a feeling like electricity running quickly from my neck down my arms and from my hips down my legs. Sometimes I get a feeling of nausea or a swimming feeling in my head. Soon my head, arms and legs begin going back and forth rapidly (esp my head) with terrific force. It goes like that for several seconds, then stops for about 30 seconds, then starts up again, and it keeps up like that for anywhere from 15 minutes to an hour and a half each time. (And these may come several times a day.) The smaller " spells " appear to be more like " jiggles " that seizures, but they come in the same " on-off " manner. They big ones take a lot out of me. A nurse once saw me have one of these (that was actually fairly mild) and insisted to my friend that I was having a grand mal seizure. The doctors say that they are not, that if they were I would not be aware of what is going on around me. Sometimes these are so strong that my arms and legs are totally limp if anyone attempts to move me, and occasionally I even appear to be passed out, but I can always hear what is going on and repeat it later. > > Along with this, I am getting increasingly weak. It has been eight months, the doctors have no ideas; they just suggest running the same tests over again, and want to treat me for anxiety. Everyone (except doctors) who has seen me have these spells agrees that they are not anxiety attacks. (I do not mean to minimize anxiety attacks!) I rarely leave the house, because it tends to make me worse. Last weekend I went somewhere with my family, and for three days after, I couldn't even get out of bed to go to the bathroom without having these. I could not keep track of how many times they came Tuesday and Wednesday. I am really feeling desperate at times. I am 44, have 6 children, 3 still at home, and want to be able to take care of them again instead of the other way around. > > Does this sound familiar to anyone out there? My doctor says he will send me to Mayo. Any suggestions? I would really appreciate any direction. > > Thanks, Dorothy > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 15, 2006 Report Share Posted December 15, 2006 Asking for help is very difficult for a lot of us, but it is the first step in allowing someone else the joy of being needed. Deb P, This was so well put that I had to resend it! Thank you for putting the words together to allow us to see that asking for help is not burdening another person, it is empowering them! Blessings, and many thanks again, Tracie NS Co-owner/moderator Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 17, 2006 Report Share Posted December 17, 2006 My true friends have told me that very thing. Not everyone is willing to step up to the plate, however. I have lost many " friends " during the course of my illness. It's too much for most people to be burdened with. The lonliness becomes a real issue, as well as the frustration of your limitations. But those that are willing to help -- make sure they know they are appreciated!!! - Quote Link to comment Share on other sites More sharing options...
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