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What to ask or mention to Neurologist?
Fri, 09/27/2019 - 10:52Topic: New to Epilepsy.com
Can symptoms persist in between seizures - such as numbness, tinging, reduced sensation, fatigue, limb stiffness and weakness?
Can nocturnal seizures be small and occur in between larger nocturnal seizures without a person realising?
Could someone with epilepsy require a walking stick due to slow legs and wobbliness?
I am looking for general information about epilepsy and other people's experiences, not medical advice as I know you can't give that, but my own personal circumstances are:
I have had episodes of waking up in the night screaming on the floor after thrashing around to find that one or both of my arms is completely numb and sometimes the side of my face. This gradually subsides to intense tingling and reduced sensation which usually lasts a few days.
In February I had two of these large episodes on consecutive nights and the symptoms lasted for weeks before gradually improving but not to full recovery. In the months since February I have had a few large repeat night time episodes (one Tuesday night, where my husband had to stop me hitting the wall :( ) plus what might be over 20 smaller episodes (I've been keeping a diary).
I have been investigated for MS and many other things but all blood tests, MRI and lumbar puncture have come back clear. I have the following which fluctuate:
Difficulty walking, tingling, numbness, weakness, fatigue, blurred central vision, stabbing pains, dizziness.
I have also been experiencing strong deja vu and seeing things that aren't there in my peripheral vision.
Epilepsy has not been mentioned, but I was embarrassed to mention to the Neurologist in my first appointment about the falling out of bed and screaming and didn't think it was relevant as it had been going on for so long. I have since emailed the Neurologist to describe this, ready for my next appointment.
I have another appointment on Monday and would like to ask about epilepsy, but want to understand more first in case I'm just clutching at straws, so anyone's experiences would be very helpful. I don't want to be dismissed without a diagnosis because I didn't ask the right thing or missed something out. I know Googling isn't a good idea and there are so many different types of epilepsy that the information tends to be quite vague. Thank you so much in advance! :)
Comments
Hi Silverwitch, Thanks so
Submitted by Anonymous on Mon, 2019-09-30 - 09:13
Hi Silverwitch, Thanks so much for posting, we understand this can be very scary and confusing to experience. We cannot determine if you have epilepsy, or not. It's very important that you continue to follow-up with your healthcare team to describe these episodes you’ve been experiencing. Additionally, it’s important that you discuss, any changes in moods, behaviors, sides effects & symptoms,to determine what individual treatment plan is best for you. https://www.epilepsy.com/sites/core/files/atoms/files/pg2L_HealthCareVisits_09-2018.pdfFor assistance and information regarding finding a specialist, or a second opinion please visit:https://www.epilepsy.com/learn/diagnosis/you-and-your-healthcare-team/second-opinions https://www.epilepsy.com/living-epilepsy/find-epilepsy-specialist Our new to Epilepsy & Seizure tool kit is a great resource and starting point for learning about what epilepsy is, what resources are available, how to make the most of doctors'visits, and how to take control of seizures.Learn more here: https://www.epilepsy.com/living-epilepsy/toolbox/new-seizures-and-epilepsy Seizures can take on many different forms and affect different people in different ways. Learn more about seizures &safety here: https://www.epilepsy.com/learn/about-epilepsy-basics/what-happens-during-seizure https://www.epilepsy.com/learn/seizure-first-aid-and-safety/staying-safe/safety-while-sleeping It’s great that you're tracking these episodes you describe, which is good information for your healthcare team to review with you. My Seizure Diary: https://www.epilepsy.com/living-epilepsy/epilepsy-foundation-my-seizure-diaryis a great tool for not only tracking seizures, but recording medical history, medications, side effects, moods, behaviors & triggers, which can be shared with your healthcare team. My Seizure Diary also helps you remember what to do- you can have reminders of when to take your medicines, when to refill a prescription, or when you have medical appointments or tests. Additionally, you may contact our Epilepsy and Seizures 24/7 Helpline: 1-800-332-1000 contactus@efa.org, where a trained information specialist can connect you to resources,provide referrals and additional support.epilepsy.com/helpline
I don’t want you to leave you
Submitted by Patriotrehab on Fri, 2019-09-27 - 16:54
I don’t want you to leave you feeling disappointed, but I wouldn’t be surprised if you are still left without a diagnosis after you see your neurologist because they haven’t witnessed the event and captured it on VEEG. Some of what you describe such as waking up and numbness, I have experienced with my nocturnal seizures. To be clear, my doctors call them focal impaired seizures because sometimes I don’t wake up, if I do I often only smack my lips or make chewing movements and return to sleep. However, screaming and some of the symptoms lasting for days I cannot relate to. This doesn’t mean that it’s not epilepsy related as I’m not in a position to diagnose and every person’s experience is different. If your neurologist doesn’t have access to VEEG, you may need to go to an epilepsy center and seek the consultation of a neurologist that specializes in epilepsy. Don’t be surprised if they suggest that you have PNES (psychogenic non-epileptic seizures) though at first as they tend to do with people whose seizures have not been captured on VEEG and 1/4-1/3 of patients referred to epilepsy centers are eventually diagnosed with this after VEEG monitoring, but this should only be done if an event is actually captured and it shows no change in electrical activity and other symptoms do not match up with some types of seizures that are hard to pick up on the EEG. So, my advice is to speak with your neurologist about VEEG monitoring if a routine EEG doesn’t reveal the kind of abnormalities that he needs to make a definitive diagnosis. I wish you the best!