I've been hard to diagnose

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I started having funny feelings on my left side of my body 2.5 years ago. They thought I had a stroke, TIA, Tumor, ect except that all my tests came back negative. For the next two years I went to many doctors and they found a lot of autoimmune diseases, but nothing to explain the strange feelings on my left side. 5 Neurologists later, he thinks I might have MG...but I think, that is not what is happening to me. It usually starts on the left side of my face with pulling and closing my eye etc. Lately though, it has moved to other parts of my body. I am fully conscious when it is happening, but speaking is slurred because my face is being pulled so tightly. My arms contract, my legs tighten up and my abdomen feels like someone is rolling up the lid to an anchovy can. The last one lasted over 2 hours, relaxing noticeably in between briefly, then starting up again. I relaxed again and then had fewer and fewer until at last they stopped about 5 hours later. Needless to say, my muscles were extremely sore the next few days. I never lost consciousness, but just before it started, I stood up and within 30 seconds collapsed on the floor. Although I went to the neurologist, he still doesn't know what is going on. All the tests, MRI, CAT scan and EEG come back normal. Is that normal with epilepsy? I have come to the Epilepsy website and looked it over, and it sounds like I am having seizures. I also think I am having "warnings" that it is coming on, because when I think back, I always feel funny a certain way on my left side, and I always say the same thing, "I feel funny." Would someone tell me what you think? Also, are there other types of MRI's they might try that might reveal anything?

Comments

Re: I've been hard to diagnose

Submitted by Emily Sellick on Wed, 2006-06-07 - 15:54

hi there, you asked if this sounds like non epileptic attack disorder...well there are many forms of this, just as there are many different types of epilepsy. there is also a 'stress\anxiety' related disprder called somataform disorder. non epileptic disorder: basically due to some underlying stress caused by something that ay have happened in your past or due to something that your body cannot cope with at present causes the brain to shut down chemically NOT neurologically therefore it displays symptoms that are the same as or very imilar to neurological symptoms therefore it is hard to diagnose. Generally doctors will diagnoe this if a person is having sz or something similar and there is no found neurological cause, this is then treated with psychiatric treatment and depending on the type of sz or disorder some drugs may be given to calm the spasms. epilepsy, has a known neurological origin, can have warning but not necessarily, HOWEVER not always do the test come back positive so if you are told it non epileptic attack disorder without trying drug treatments DONT be fobbed off cos it not right if it just hasnt shown up on ur scans. ok now somataform disorder is very similar to non epileptic disorder, it stems from psychological unrest, even as with n.E>A>D you may not feel stressed or upset etc in any way t may stem from the past, somataform disorder basically shuts down ur body so that u have paralyss similar to MS or a stroke, though there is no known neurologicl origin, it may cause pain but you will always be concious, it may get worse ie you can be paralysed for the rest of your life r it may get better (i have friends from both situation) to help with the muscle contractions tlk to ur dr about muscle relaxants that u could tak when an attack starts so that it may nt last as long and ease the soreness. in hope this helps, if u need more advice dont hesitate to email me or blog me..beaniebabs2@hotmail.com take care Emily :o) x x x Friends like those that I have found here are friends that will last forever. Thank you all, you are lovely!!! :o)

Re: Re: I've been hard to diagnose

Submitted by Zabeth on Thu, 2006-06-08 - 10:23

Thank you Emily. That is very interesting. I will be seeing him in a couple of weeks and will talk to him. In the meantime, I will do more research on it. Thanks again for being so helpful. Elizabeth

Re: Re: Re: I've been hard to diagnose

Submitted by Emily Sellick on Sun, 2006-06-11 - 15:07

need any more info just ask i looked into things a lot, cos i was hard to diagnose and i still ot convinced with my diagnosis!!! just yell (or blog me if you do take care and good luck also u welcome to read my blog emily x x x Friends like those that I have found here are friends that will last forever. Thank you all, you are lovely!!! :o)