Can anyone relate to the following day: I am at work feeling good, able to multi-task and accomplish all my work. Next minute I start feeling my heart race, and I have numbness and tingling in my left side leg, arm,and face. After a couple seconds I begin to lose muscle control in my neck and my head falls to the side, my eye muscles spasm and cause my eyes to roll up very tightly. My upper lip and cheek twitch and my jaw clamps down. I can hear people talking to me but am unable to speak, swallow, or move my limbs. This condition lasts for about a minute or so, and is followed by several hours of poor speaking ability, uncoordinated gait, extreme fatigue, inability to focus and severe neck pain. These "attacks" have been happening for 4 years and seem to be gaining severity. I have been told everything from encephalopathy to psuedoseizures. I actually started to believe that it was all in my head after hearing so many Drs come to that conclusion, but I am a nurse and I know that this is not the case. If anyone has any treatment suggestions or advice I would greatly appreciate it. Or just talking to someone who knows what it is like to live in this hell would be great.
I kind of have had an attack like that except no eyes rolling up and mine lasted 3 ta 4 weeks of those symptoms plus more. Yours however kind of sounds like your having minnie strokes to me? Cause of the eyes and clecnched jaws and such. When i have an attack i get the brain explosion as i call it and in the matter of minutes am numb wobble lose control of on side and tighy and numb on the other ect ect but definalty no eyes roling or jaw tightning. ( ny jaws do want to clecnh down when i sleep my dentist told me to stop and bite on a blanket when i sleep so i dont hurt my teeth no more! lol) I'm diagnosed with MS looking into lyme cause symptoms dont fit. I think lyme can cause seizures minnie ones or big ones and i belive it does cause clenching and tightnin of like hands and other body parts ... I saw that on a documentary about lyme.
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Lyme has been called 'the new great imitator' because it manifests in different people in such different ways. The old 'great imitaror' is syphilis, because it too creates a wide variety of symptoms. Therefore it's not unusual that your symptoms might be different from everyone else's, if you have Lyme.
I have had muscle cramps with Lyme, but not to the extent of yours. Magnesium supplements have helped me stop the cramps and twitches.
One thing that might interest you is a documentary movie called 'Under Our Skin' which came a few months ago. You might be able to access it online or through a video store/website. There were a couple of people (real people, not actors) who had symptoms that sound like yours. I recommend the movie. I saw it in a theater and some of the people in the movie were there and took questions afterward ... the blonde who had the severe muscle problems was there, and at first I didn't realize who she was -- she looks great now, compared to how much she was suffering during filming.
MDs have a very hard time understanding and diagnosing Lyme and its co-infections (the bonus diseases that often come with the same tick bearing Lyme), and neurologists and rheumatologists are particularly stubborn. I personally went through at least 20 MDs before getting diagnosis and treatment of Lyme and a co-infection.
Have you looked for a so-called LLMD (Lyme-literate MD), who take a broader view on diagnosing and treating Lyme? Also try the ILADS dot org website, which is the renegade in the field, not buying what the entrenched career-o-crats at the CDC are selling.
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