I saw a Neurologist today regarding symptoms I’ve had non-stop for over a week. I spent four days in the hospital with extreme pressure in my head, feeling very unsteady when I try to walk, heavy head, headaches, disorientation, trouble talking, trouble taking a deep breath, eyes feeling like they can’t keep up with any movement I do. I was discharged and told that a CT looked normal, so no further tests were needed. My symptoms never changed, never went away. Now, still with the same symptoms, I saw a different Neurologist and she thinks I might be Epileptic and my symptoms are a result of seizures. Can anyone shed light on this? I haven’t been diagnosed with CM, but we keep looking into my symptoms as a whole and they keep pointing to CM as the only thing that doesn’t have missin pieces. Is Epilepsy something that any of you have heard before with similar symptoms? Thank you so much for any help, I’m so frustrated and anxious with all of this.
Thanks for the feedback, Emmaline. We begged for an MRI while I was in the hospital, to no avail. But when I had my follow up appointment after being discharged, the NL I saw ordered an MRI of the head and c-spine. We're waiting to hear back about those results. It's been several working days, so we're thinking that means that they didn't see anything urgent. This week I'm in the Epilepsy Monitoring Unit with leads coming off my head like Medusa, lol. Still have the constant pressure and headaches, difficulty focusing on anything for too long (reading is hard, which is driving me crazy because I read constantly!), but my speech and walking seems to be much better. Also getting severe heartburn almost all day, every day. And my tail bone feels bruised on and off, but not constantly. Praying for answers soon.
Emmaline said:
It's very difficult to diagnose anything without the proper tests to go from. Have an MRI of your head and spine to determine whether you have CM or not, NL are typically not great with Chiari, and blow off symptoms as not related to CM. With your symptom list, you should have had an MRI all ready by now! Tell your dr to get on it!
I'm sorry you're getting the run around. It's one of the most frustrating things we have to endure...You may have to switch drs to get the tests you need.
Smozer,
I'm actually currently doing a week-long EEG monitoring at a facility. I don't ever feel like I'm losing coherency, so I've been thinking that this is sort of a waste of time. But I ended up chatting with another patient in here yesterday that has been diagnosed with non-epileptic seizures and she said she always feels coherent during her seizures, just feels like she's zoning out for a minute. We had a lot of similar symptoms so it made me think that maybe that is what's happening to me. I can't believe you had Chiari back in 2002 and it went undiagnosed. I'm also so sorry that your insurance won't cover an out of state specialist. It's crazy that doctors can just not know about something so debilitating.
I had MRI's of my head and c-spine last week, but I won't get the results until next Friday. I'll post what we find out. Thanks for the response. This forum has been so helpful.
smozer said:
I was diagnosed with Epilepsy 33 years ago. Additionally, I was diagnosed with Chiari 1 a few months ago. I have had Chiari symptoms for over ten years and they have recently become severe. Now that I know what Chiari is, I got the images from an MRI that I had in 2002 and it showed that I had Chiari back then but the doctors ignored it. The doctors simply write all my symptoms off to being Epilepsy. My sister also has Chiari and underwent decompression surgery in 2002 and is doing great. She had all the same symptoms as I do. Doctors just don't listen. I have lived with Epilepsy longer than most of my doctors have been doctors! I live with these problems daily and know what is Epilepsy related and what is not.
I can deal with Epilepsy, but Chiari feels like a death sentence for me. Now I am looking for specialists out of state but it will not be covered by insurance.
Have you had an EEG?