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Waiting and wondering if anyone had this experience?
Tue, 06/27/2017 - 01:28Topic: New to Epilepsy.com
Hi, I've been waiting over a month and a half to see a neurologist to get answers and it's killing me. I'm 29 years old and in May I stood up to hug my father goodbye and don't remember much else except that when I woke up my body was shaking and wouldn't stop. I do not remember feeling lightheaded, there was no warning. My body shook for hours after I was in hospital and then my body ticked for about 4 days afterwards. Looking back, I have fainted without reason and "shook" two other times, once 7 years ago and one time 5 years before that. The only thing that each episode had in common that I can remember is extreme noticeable fatigue lasting for a few days leading up to the episode. Doctors didn't test me properly and said I was stressed, but I wasn't. I've had an EEG, where I began ticking again after the light test just on my right side. I was also at a service where there were lights and it happened again.. ticking on the right side lasting about an hour.
I'm not sure what this could all be, or mean! I'm just wondering if anyone else had these symptoms and was diagnosed with something?
Comments
Thanks for the comments! Day
Submitted by Yvette_5951ea57ea7e6 on Sat, 2017-07-08 - 01:02
Thanks for the comments! Day is approaching next week when I can see a dr!
It is hell having to wait so
Submitted by mariet_5926de5df37df on Mon, 2017-07-03 - 12:16
It is hell having to wait so long to see a specialist. I presume you have had bloods done etc. Good idea to write the events in a s much detail as you can. get your GP to send the account to your neuro ahead of you appointment also any casualty discharge letters(take them with to appointment)in case they haven't had them anything that will help. In the mean time log as much as you can, you mood, events what you doing, how much sleep you getting anything etc. You can draw rough columns with those various headings. Then you can take this to your appt. Best take someone with you and draw up at list of questions as well.Prime the person with you to make sure to get answers to anything new the neuro tells you about e.g. medications, conditions what to expect etc. Also can they put you touch with relevant support e.g. epilepsy nurse (I am not saying it is epilepsy just using this as example).Contact the various helplines via the internet you can get details. If in UK a good one staffed by knowledgeable nurses is the Spine and Head org (or some such name) Tel:0808 808 1000Good luck, and try do as much as want in your life, don't want to be thinking about this all the time