Hello everyone, I am a 22 year old female from Long Island, New York, although I feel like I have the health of an 80 year old woman. In November of 2006, I experienced my first of many strange episodes. I was driving home from school when all of a sudden I felt this miserable sensation throughout my body, almost like a hot flash. It felt as if a venom was traveling through my veins from head to toe. I felt as if I was on the verge of passing out and my heart was racing. I was very nauseas, dizzy, and became extremely weak. I called 911 and was taken to the hospital, being released later that day with "anxiety". I didn't think anything of it, and went on with everyday life. However, a few weeks later, the same thing happened and this is where my 10 month journey began. What started off as these random episodes has turned my life into a living nightmare, so much as that I am considering withdrawing from school. These episodes have turned to start resembling seizures (I have severse jerking of my limbs), but do not fall into the common criteria for a seizure. From November until now, getting worse with each month, I feel HORRIBLE everyday. I have had such strange sensations and symptoms that have lead me to over 25 doctors of every type imaginable, and numerous visits to the ER. I have recently pieced together that these episodes occur only 24-48 hours after alcohol use, and since I have stopped drinking, the episodes have stopped. However, the misery that I feel everyday has only gotten worse with time. Although I was tested for Lyme by my Neurologist back in November and had a spinal tap this past July to which both were negative, I FINALLY tested positive 2 weeks ago when I went to an infectious disease doctor. Although my ELISA, PCR and Western Blot iGg test came back negative for Lyme, my Western Blot iGm test came back positive. This doctor still refused to put me on anti-biotics and insisted that I come back in a month to re-test. My mom went to a Lyme Disease Association Forum out in Riverhead and researched a bunch of ILADS doctors considering my infectious disease doctor was of no help. I have recently gone to an ILADS doctor who took a series of bloodwork to be sent to igenex, but it won't be back until next week. I feel so confident that I have Lyme due to the uncanny similarities of my symptoms although I never noticed a rash, but are looking for any reassurance as to whether anyone else has had some of my symtpoms...here goes the list (I might be here for a whilehttp://www.mdjunction.com/components/com_joomlaboard/emoticons/tongue.png )
-CONSTANT MALAISE (I can't put my finger on what feels wrong but I constantly feel like something just isn't right)
-Visual disturbances (floaters, flashes, shaky vision, peripheral shadows, what looks like millions of tiny particles-- it looks like i can see air, words moving on paper while reading and looks as if the floors is moving like waves sometimes, get worse after driving distances iI guess from focusing)
-Ringing, pulsing in ear
-Feeling the need to "pop" my ears, pressure
-Uncontrollable muscle spasms (all over body)
-Extreme eye twitch in upper eyelid of my left eye
-Creaking/cracking in the base of my skull/neck that is getting worse with time
-Dizziness/the "spins" sensation
-Head rocking (my head shakes up and down in what seems to by rhythm with my pulse)
-Throbbing/pulsing sensation in my head/neck/face/stomach(it feels like I can feel my pulse in my brain)
-Shaky hands, arms, muscles (My hands tremble, I notice it a lot when I read magazines because the pages shake)
-Increasingly worse heart palpitations that have been recorded by my cardiologist
-Sensation when I'm laying down as if I am rocking on a boat
-Body rocking (my body actually rocks back and forth involuntarily on occasion)
-CONSTANT FATIGUE ALL DAY, EVERY DAY
-Inability to fall asleep at night
-Irregular menstral cycle
-Sudden muscle jerks/movements
-Loss of balance/tip over while walking/walk into things
-Vibration sensation in my feet
-Feeling as if I can't take a satisfying, deep breath
-Loss of energy
-Pressure and sometimes pain in my knees, hips
-Slowed processing of information
-Inability to keep concentration
-Headaches/ sharp pains in the back of my head that last for a few seconds but are persistent and sometimes constant dull pain
--I'm sure many more that I am forgetting
I have also come to the conclusion that after alcohol usage these symptoms come out HORRIBLY. The next day after drinking alcohol, not even if it's just a few drinks, I feel fine for a few hours but then all of a sudden feel as if I'm DYINGGGG. I cannot even descriube the sensations that my both goes through, almost as if a venom is traveling through my blood. Dying is the only description that justifies the magnitiude of the way I feel.
I must add that all of this has lead to anxiety and depression which has only made matters that much worse. I do take .25mg Xanex when I feel very sick and although I become relaxed, my symptoms do not decrease. I never have the desire to do anything anymore and I lay around all day because of how sick I feel. I have been on antibiotics for Lyme including IV rocephin for a month, but have been on antibiotics for 9 months total with little to no improvement.
I need help...I feel like I have no where to turn and my parents feel so helpless. I have had every test imaginable from a colonoscopy to MRI's, MRA's, an EGG, EMG, a spinal tap and countless amounts of bloodwork. I have seen an infectious disease doctor, a neurologist, cardiologist, endocrinologist, GI, Opthamologist, Neuro-opthamologist, movement disorder specialist, and the list goes on. Doctor after doctor has told me that they can't classify my condition or that this is some kind of strange anxiety. I truely feel that I know my body and it's not. If ANYONE can please comment on my story, relay some helpful advice or let me know if you've had any of my symptoms PLEASE DO, I will appreciate it more than you know. The past 10 months have turned my life into a living nightmare and I am losing hope of feeling like my normal, happy self with each day that passes. The only thing that brings me comfort is reading symptoms and stories of other people and feeling as if I'm not alone. I think that it's so wonderful that people can join together to help eachother and offer advice and consolation and hope that this will turn out positive for me http://www.mdjunction.com/components/com_joomlaboard/emoticons/smile.png Thank you for your time and please feel free to contact me!http://www.mdjunction.com/components/com_joomlaboard/emoticons/cool.png
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