- CASE FILE
I've been having reoccurring un-diagnosed neurological problems since 2005. I went from active and outgoing to practically a recluse.
ABOUT THIS CASE FILE
Everything started out gradually; In 2005, I started having bad headaches and dizziness, thinking it was low sugar, I would eat something, sometimes helping, sometimes not. Then I started getting tremors in my hands, that slowly got worse and would sometimes be full body tremors. I had started to "zone out", often in mid sentence of a conversation, not even knowing it happened. I started getting scared so I took myself to the hospital. They did a CT and Spinal Tap and other test. referring me to a neurologist. Before my first appointment, on New Years Eve, 2005, I had a bad headache; I went to lay down; when I got up about an hour later, the whole right side of my face had drooped. The next day, I went to the hospital, but by then, my face had gone almost back to normal. My first MRI, I was told was "abnormal" and I was put on Depakote, shortly after, the doctor called and said it was a mistake, my MRI was normal, increased my Depakote and added other medications, too many to list. He kept telling me there was nothing wrong with me, but kept adding more medications, as my symptoms got worse, telling me it was pseudo this, pseudo that, all in my head. I had an EEG that came back abnormal, but he ignored it. On several occasions, I would have "seizures" in his presents, which his accused me of "faking" them. I would have episodes where the words in my head wouldn't make it to my mouth. I was terrified, and no one would listen to me. I didn't have Insurance at the time, so the State was paying for this doctor. Different things would "trigger" my symptoms, mostly sounds. The facial drooping became common. This went on until 2008. I had stopped taking the medications, and gradually went into remission by mid 2009. I was never 100%, but I was glad to be almost normal again. Then, in early 2014, I started getting the headaches again, daily, then the tremors started again, then the facial drooping, it started to effect my job. I was sent to the hospital from work because they thought I was having a stroke in November 2014, again in December 2014. I was told I wasn't having a stroke or TIA, but had residual effects, I lost my job, because of it; after that, all my old symptoms came back with a vengeance, with new symptoms on top of the old, I started to "feel drunk" all the time, from mildly drunk to full S-faced drunk, I could barely walk, my balance was off. It went from occasional, to daily. Days, I could barely get out of bed. I could barely function. Sounds and Smells among other things trigger my symptoms. Stress makes them worse. One doctor said I was just "depressed", any depression was due to not know what's happening to me. I started seeing a doctor who promised to "get to the bottom" of my problems. I'd gone through several MRI's, CT scans, EEG's, the blood test for MELAS, and MG, MS and Lyme. (I have 4 bands for Lyme.) and a field test for HD, all of which were "ruled out". I was told I have Ataxia Symptoms. One neurologist said she simply didn't have the resources to figure out what was going on with me and referred me to the Mayo Clinic, but they didn't take my insurance, and I didn't have $5000 to walk in the doors. One neurologist looked at my "normal" MRI's and CT that I had taken with me to the appointment and told me that my brain had shrunk abnormally for my age. She was going to help me get to the bottom of things, but then, wrote me off. This time, none of my doctors medicated me without a diagnoses. I started to refer my episodes as "Short Circuiting" because it was the only other way I could describe what was going on with me. Last year, my daughter stayed with me because I had gotten worse; she had me try L-Theanine and Ashwaganda because they were for brain health. I tried them. After being on them for a few months, I noticed that my symptoms started to fade; they weren't as severe, then, the frequency of episodes lessened, until finally, in February of this year, I hadn't had an episode at all. I thought I was in remission. Then, last week, I was having an MRI for other health issues, and the MRI triggered my symptoms again. Very shortly, after having the MRI, I started to Zone Out, again. Slurred speech, couldn't get my words from my head to my mouth. It drained me from all of my energy. Two days later, I was at my pain doctor's office, having a treatment. Before I made it to my vehicle, the right side of my face started to droop. I went back in the office, and waited until the symptoms subsided a little. He was very concerned. I don't know what's happening to me, or why. Not knowing is the worse, I would rather know the worse, than this. My over all health has declined rapidly because of all of this. I hate to go anywhere anymore. Something as simple as the background noise from eating out will trigger my symptoms. I have to struggle daily, especially if I'm having my "short circuiting" episodes. My boyfriend and several friends have pushed me to contact you, especially now that my symptoms have been triggered again. I wouldn't have been able to see any doctors at all if it hadn't been for Subsidized Insurance. I can't afford to go to the Mayo Clinic as I was referred. I just had a CT ordered by my pain management doctor, who also ordered an EEG and referred me to a neurologist in Miami. I have many symptoms, some already mentioned, others including: A-symmetry of my face, a pronatal drift, my right foot drags, the right side of my body is the most effected including numbness, my vision blurs, my headaches are in my temporal lobe- sometimes like someone is stabbing me in the head with an ice-pick. When I'm "short circuiting", I can't get my words to go from my head to my mouth and I have to struggle to talk. My handwriting becomes illegible. Ataxia takes over, I can barely walk, and have to use a cane or a walker, I get "bobble-head", I "zone out", I forget things, words, names, items, etc, my hands will twitch, or I'll have hand tremors, sometimes full body tremors on really bad days, I have hyperactive reflexes as well. I just want to know what's happening to me. I don't expect I'll ever have the life I lost, because of all of this, back again, but I believe it has to have a "name", there has to be a reason that this all started. I just want to know what I should be prepared for. I'm sure I'm forgetting something. My symptoms weren't bad every day, but they're present. Now that they've begun again, I'm reaching out. I hope you can help me, or at least give me direction. Thank you.