Hello, I'm a 30 year old female and I have been experiencing strange neurological symptoms for a few weeks now. I am a phlebotomist with a lab and work with computers and doing fine motor movements all day.
Background- A year ago I started with "flashing" in the eyes. Like a strobe light in the corners of my eyes, worse on the left. It was only at night, and only when looking at something red or orange. We are big Philadelphia Flyers fans, so there is a lot of orange in my house and it would seem that the flashing light was just on that color when it was in my field of vision. Now, I notice it a lot during the day in my left eye and rarely in the right eye. Saw 2 opthamologists and both say it's posterior vitreous detachment aka the fluid in my eyes is shrinking and pulling on my retina. They admit I'm young for this problem, but "its a natural process" they say. I have had floaters since I was about 18 and the diagnosis has always been PVD, but this flashing was new starting last year.
A few months ago, I had really bad neck pain on the left, along with a lump behind my ear and had an Xray, which of course was negative. My PCP said it was muscle strain and gave me Flexeril and Iburofen. The pain went away, lump is still there, but of course nothing was on the Xray so the doctor dismissed it as a lymph node.
About 6 weeks ago, I noticed my big toe on my left foot was twitching. Moving back and forth by itself. Then within a week, I started to feel a like someone was plucking on my sciatic nerve, a deep "twang-ing" feeling and a vibration all the time- like my foot was in on the floorboard of a car with no exhaust or like an electric charge building up. The muscle fasiculations are visible to the eye in my leg, you can see my calf and buttocks and thigh moving. My toe will move so much, I'll try not to put weight on that foot because it makes me unsteady. I feel a constant tingling, but the electric shocking feeling comes and goes.
Now, I have had 2 microdiskectomies at L4-L5 on the right and L5-S1 on the left and the last one in 2010 was because the disk at L5-S1 fragmented and was stuck in my spinal canal. The swelling was so bad, I had to be on high dose steriods before they could operate and it left me with a drop foot/weak achilles tendon in my left foot. So when this toe movement started, I went back to my spinal surgeon and we did another MRI showing the disk L5-S1 on the left is bulging again and to add to it, the L4-L5 on the right that I had operated on in 2007 is herniated again. He said that my nerve was obviously very irritated and proposed an epidural steriod injection which I did not get- because then the same thing started happening with my left thumb, literally as I was scheduling the appt. for the epidural. Plus, I wasn't having any nerve pain, my muscles hurt from the spasms, but nothing like I'd experienced with my back in the past.
So, now my left thumb is intermittently moving and the toe/leg are going nuts all the time. Then about a week ago, I got really stressed out at my 2.5 year old and my neck sort of spasmed, although it didn't hurt like a muscle spasm, but it pulled my head down and to the left and my left arm sort of curled up. Luckily that hasn't repeated since. I wanted to go to the ER but then realized they would probably just tell me to follow up with a neurologist, and I already have an appt. (for tomorrow 9/12) so I didn't want to spend my $150 copay for that.
I clench my teeth really badly at night, so much so that my teeth have actually loosened and worn down from it. I have had many "sleep paralysis" episodes which my doctor said are normal. I wake up but cannot move or speak. I can control my breathing but nothing else.
I have constant fatigure, weight gain despite dieting, joint pain. Lately, I've had really bad mood swings. And no, I'm not pregnant and I'm 100% sure on that!
I had blood work, all normal besides an elevated C-reative protein at 14.8, which is always high when they test it on me (and the rheumatologist I saw said it must just be "normal for me"). Lyme negative (on several occasions, including a western blot several months ago), other tick bornes like Ehrlichia and babesia negative, normal chemistries, normal CBC, normal sed rate (strange with the high CRP?). I've had my ANA tested multiple times in the past and its always neg. All autoimmune tests are always neg. like, Rheumatoid Factor and stuff like that. I did have Epstein-Barr last year though. I am still awaiting B12/Folate and Heavy Metal tests, which I had to insist on. I'm trying to cover all my bases for the neurologist.
An MRI of my brain w/o contrast was "unremarkable" 2 weeks ago.
I was researching things like epilepsy and partial seizures and wonder if I sort of fit the bill. Could I be having focal seizures and be aware during them? Could they be triggered by colors? I am very overtired with a 2.5 year old, stressed about work too, which could be exacerbating things. I feel especially tired a lot during the day, like I can barely keep my eyes open. Ironically, I get really tired after reading a book, and I love to read. I am a speed reader, I can cover 100 pages in a hour, but lately can't get through more than a few chapters at a time without getting tired. I get worried with the eye flashing that I'm sort of overworking them, so I'll stop reading to rest my eyes.
I was diagnosed borderline ADD when I was in school, but always did well, but I do "zone out" a lot. I also have a really high sensitivity to asparatame/nutrasweet, I get extremely dizzy and nausesous from them. Even sugar free gum.
It's just strange that all the issues right now are on the left side of my body, and when I mentioned it to a patient I was taking care of, they mentioned epilepsy. Obvisously, I'm no doctor but it's still an interesting theory. I was just hoping to get some opinions and guidance on what sort of things may be in store for me.
Like would the neurologist perform and EEG at the office visit? Could the abnormal electrical activity be happening almost all the time, because my leg/toe are almost constantly moving, every 10 min. or so. I would like to know what to expect from the visit I guess, and maybe what kind of questions I should ask the neurologist or what might be helpful for them. I have made a list of primary and secondary symptoms (that may or may not be related) with timelines indicated on it. I just want to get the most out of my visit, especially because I am driving to another state for it since none of the neurologists near me could see me until December and I need my steady hand back in order to work!
Thanks in advance, sorry for such a long post, but I wanted to be as informative as possible.
Carly