Ok, I'm not even sure where to begin here. About 10 years ago I one day started with symptoms that I think are simple partial seizures. I have a constant feeling of tingling/vibration/hyper-awareness feeling in my hands and feet that varies in severity depending on the day. When I have an "episode," where it feels like that feeling reaches some threshold, I have uncontrollable muscle movements that will progress up the side of my body starting in the foot and quickly (within a second) moving up my body, down my arm, and into my face. The muscles will contract and I won't have much control over them. Not complete rigidity, but if I'm walking I will stumble or if I'm talking it will be slurred because my tongue and mouth will be effected. My eyes always roll up to the left for some reason. The seizures are worse when they happen on the left side of my body than on the right.
These episodes for some reason decreased drastically (from dozens a day to maybe a few a month) while I was at college as opposed to living at home, though would come back on when I moved home for the summers until I had an air filter installed in my room. I've now moved out into an apartment and refused to bring the air filter to see. The symptoms are back and bothersome enough that they are a problem, but vary in severity as stated above depending on the day. It'll get bad for a few days/week, then back off.
I have other muscular/neurological issues as well which may be of significance: pretty bad balance, muscle cramps/twitches, joint soreness (hips and shoulders), and what I can only describe as tension in my lower arms and legs that makes me always try to stretch them out.
I've seen numerous neurologists but no answers. I've had two EEGs, an EMG, and two MRIs that all came back normal. I've tried Neurontin and Topamax, the latter of which gave me terrible side effects. I could only stay on it for 2 days because the dizziness was so bad despite being on a very low (25 mg) dosage. The Neurontin didn't do much, though I was again on a low dosage (200 mg) once a day.
I hope this was clear enough to understand. I've told this story so many times I feel like I leave stuff out each time so sorry for any confusion! Any suggestions re diagnoses/tests/doctors/etc? I'd appreciate any information whatsoever.
P.S. I also have PCOS (diagnosed without seeing cysts). Didn't want to group it in with everything else in case it just causes confusion and doesn't matter.
Your post peaked my interest because I'm in the beginning stages of figuring out my own set of symptoms, which resemble yours to some extent, although they're no longer intermittent. The air filter however, is confusing and could be coincidental. I have been working hard to detach emotionally, in order to be able to tell my primary care physician about what's been going on with me. We go way back. I have a history of a poly-traumatic automobile accident, then recovery from alcoholism (post 2 years), childhood sexual abuse and so on. I'm find the more specific I can be, and the less other things I bring into focus when trying to explain my symptoms- the better. (I did have an Oreck air purifier in my room too, and got rid of it though! Lol!)
It's totally terrifying, I know! I had what I believe was more than just a focal motor seizure, and since then (March 28th) my symptoms have become full time. I have these myotonic, full body/ limb movements that start way down deep in my spine and seem to work their way out to the surface. Always before that the muscle weakness and cramps have been happening. My Doctor hasn't been on board so far and has had the audacity to tell me I have "Conversion Disorder," or "Cellular Memory" from my childhood sexual trauma! I know it's not his place. I feel strongly that this is bordering on breaking his Hippocratic Oath of 'First Do No Harm!" Just because of my history, and the fact that I have had severe PTSD in the past, and the diagnostics MRI's and Blood tests, Nerve Conduction Studies done all last year were inconclusive doesn't mean I'm automatically a "Nut-Job!"- I feel it could be that a neuromuscular disorder which hasn't made it's presence known at a diagnostic level yet. However, it certainly has made itself known to me- with my sensitivities, it is impossible for me to ignore! I too did not tolerate the neurontin (gabapentin) and topamax. They had bad side effects for me as well!
Where to go and what to do next...??
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