Newbie here with lots of twitching
Sorry if this is long, I want to provide background to be as informative as possible.
Background, when I hit 18 everything changed for me. My back started to degenerate and I herniated a few disks, I had knee pain too. I started gaining weight. I lost energy. I developed "floaters" in my eyes and at 1 point, optic neuritis for which I was given a short course of steriods. I had very bad, constant diarrhea (I lost weight during these periods).
Each thing was attributed to separate causes. Cheerleading and horseback riding for the back and knees, weight gain and fatigue to hormones and Polycystic ovaries and the floaters were classified as PVD (posterior vitreous detachment). Diarrhea was actually misdiagnosed as Crohn's until I saw a new doctor 2 years ago and we discovered it was really just severe lactose intolerance. All the rest were dismissed by doctors basically.
So now I'm 30, overweight with no success dieting and have had 2 micodiskectomies in my back.
Last April I actually had a lumbar disk fragment and now my achilles tendon on the left side is weak and I have a drop foot because of it. A year ago started with "flashing" in the eyes. Like a strobe light in the corners of my eyes. It was only at night, and only when looking at something red or orange. Wierd huh? Now, it's all the time in my left eye and intermittent in the right eye. Saw 2 opthamologists and both still say it's PVD.
A few months ago, I had really back neck pain on the left and had an Xray, which of course was negative. My PCP said it was muscle strain and gave me Flexeril and Iburofen. It eventually went away.
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. 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 went back to my 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 proposed an epidural steriod injection which I did not get because then the same thing started happening with my left thumb. So now the thumb is going and the toe/leg are going. Then 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. Luckily that hasn't repeated since.
I had blood work, all normal besides an elevated C-reative protein, which is always high when they test it on me (and the rheumatologist said it must just be "normal for me"). Lyme negative, other tick bornes like Ehrlichia and babesia negative, normal chemistries, normal CBC, normal sed rate. 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. An MRI of my brain w/o contrast was "unremarkable".
I have an appt. on 9/12 to see a neurologist. Hopefully I can get some answers. I draw blood for a living and I can't hold the needle in my left hand anymore, I've had to switch to my right. I just hope it stays on the left for now and doesn't progress to the right or I'm screwed. Especially since the doctors keep blowing me off like I'm some looney.
I hope I can find support here, or similar stories so help aid me, since it seems I've have to push on for a diagnosis.