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1734603 tn?1310425995

Bizarre Symptoms With No Diagnosis/Cause. PLEASE HELP!

For over 6 months, I've experienced some bizarre symptoms which are probably related.  There is no supposed cause, even after I've had a CT scan, an EEG and visits with two neurologists.  They've found nothing wrong (ie No brain tumor, no meningitis, no poison, no neurological abnormalities).  I know for a fact that all these things are real and have happened to me.  Family and friends have seen my symptoms in action.  I just need to know what I'm dealing with and how to make it better.  This is beginning to affect my quality of life, and I know I could have it much worse, but I still don't want to feel like this.  These are the symptoms I have and how they manifest in me.

Twitching/flailing/tics/possible partial seizures: This comes on without warning and can be made worse by anxiety and agitation. It's always painless. It's worse on the left side of my body, but may affect my whole body.They last from a few minutes all the way to several hours (but that's very rare). I often feel the need to slam myself onto my bed and flail my arms/legs, but that has yet to prove helpful in relieving this. What I mostly experience are moderate twitches and wobbly moments: much like I have vertigo, but had not been moving.

Staring/Spacing: I stare at random, and I see everything in front of me, but it doesn't register that I'm looking at anything.  I was staring at a blanket and pillow on my bed a while ago, but they weren't a blanket and pillow- just a fuzzy pink thing, a smooth white thing with a greenish blue thing behind it (my wall).  

Weakness/numbness/spark-like pain: This is worse on my left side especially in my lower arm/hand. My muscles feel abnormally weak: weak to the point where I don't want to pick anything up because I can't get a strong enough grip and can't judge the weight of the object. When I regain enough feeling, I get these little shooting pains starting from the inside of my elbow and ending at my fingertips. They feel similar to the little zap one gets from static electricity. Also happens on the left side of my neck, jaw and back.

Dizziness:I turn my head and I feel it a few seconds later. My head often feels heavy and is hard to hold up. At worst, my head seems to be drifting away from my body.

Left leg wobbles/jerks while walking: This doesn't throw off my coordination very much and isn't painful, but it's like I'm balancing on one of those exercise balls with a flat bottom. I have yet to fall, but I don't know when this will come on, how bad it will be, or when it will go away.

Forgetfulness/Short-Term memory loss and confusion: This could be a result of my ADHD, but I often forget what I was saying or doing right as it's happening. I may remember after a few seconds, a few minutes later, or just forget what I was doing and move on. I have a hard time communicating during this- I will say something totally off topic and/or have difficulty finding even simple words. I occasionally say things unrelated to the task "I need to find my kitchen" (said once when I was looking around my house for my cell phone).

Fatigue, even after activity for relief: I get hit with massive waves of fatigue, and despite stretching or sitting up, I need sleep. My eyelids drop, I fight to keep them open, but fail. During these "naps" I'll be out for an hour (often longer) and upon awakening am still fatigued.

Unusual headaches: These are not what most would think of as headaches. They're not so much sharp pain as they are squeezing pressure. I get a dull aching, (sometimes with a moderately sharp throbbing pain), primarily on the left side of my head (from my brow-bone to the base of my skull). It feels like my head's in a vice, but am only squeezed enough to feel pressure and not extreme pain. Often feels like my head is rushing/full of liquid, and it's about to burst.  These ccasionally affect both sides of my head: I feel like a huge hand is wrapping around the back of my skull and squeezing forcefully.

Hypersensitivity: I have acute senses when compared to most people (my vision is the only exception). This will become far worse when I'm stricken with a headache. Example: Right now, I have one of these headache things, and the light of my computer isn't bothering me, but the sound of typing is horrifying.

Feeling the need to be squeezed/crushed: This one is fairly new: I have times where I will bind myself inside a blanket or bed sheet, and still feel like my body has no gravity to hold it together. I've asked my dad to give me bone-crushing (by regular definition) hugs/squeezes, and I feel no better. I would do anything for relief of this, even let my roughly 220 lb dad walk on my back.

Significant decrease in appetite: I wouldn't mind this so much, but I never want to eat anything anymore.  I only eat when my stomach is clenching up into my throat, my tounge and fingertips feel tingly and I feel as though I'm going to faint.  At the worst, I feel too nauseous to eat anything.  That has become a "normal" thing for me recently.  

Left side of mouth/lips seems to be loose, may droop: Another new-ish thing. I notice this only sometimes, but when I do, my lips feel like they fit more loosely on the left side of my face. I have taken pictures of this, and I look like I received Novocain and am still trying to regain feeling.

I am a 21 year old female who has been previously misdiagnosed with (and thus, uneffectively treated for) Bipolar Disorder and Borderline Personality disorder.  I am now being treated for ADHD and related anxiety/depression.
8 Responses
Avatar universal
Find a way to get tested for Lyme disease and/or mycoplasma infection.  Flee away from mainstream medicine!
553995 tn?1332022440
Kait, I second what Bob wrote. As I was reading your symptoms, they are seizure like but seem more like you have an irritant, a tick  bourne bacteria or a paracite in your brain/spine.  I don't know where you live but if you have traveled to a foreign land where you could have picked up Malaria or a paracite, get specific tests done immediately!

I live in NJ and contracted a Malaria like tick disease called Babesiosis just by living here.
Avatar universal
Possible Lyme Disease and or mycoplasma and other co-infections. Research it online and go to www(dot)ilads(dot)org and contact them for an LLMD (lyme literate medical doctor). also go to www(dot)immed(dot)org and look under the infectious disease research for possible co-infections. NO standard medical is going to be able to figure this out. Trust me! Research research research. Only get the igenex test done for lyme as the elisa and western blot will miss 35% of the time. Waste little time. The longer it is in you, the worse you will get and harder it is to treat. This has become an epidemic. So many people with the same symptoms, some thinking they have HIV, others thinking they have autoimmune disorders or an std. Ofcourse all those tests come back negative. Usually when you get lyme it will come with some nasty co-infections like bartonella, babesia, babesiosis, mycoplsma fermantens/incognitus, mycoplasma genitalium (or many other mycoplasma infections) and your immune system gets overwhelmed. Lymes is a disease that mimics so many other diseases, parkinsons, alzeimers, MS, arthritis, rhuematoid arthritis, lou gherigs disease, lupus, chronic fatique syndrome and just about anything. And when you go to the doctor one of those is what they usually diagnose because they are not lyme literate. They will give you meds that obviously wont work and you will spend thousands of dollars and you still wont know what is going on.
Avatar universal
wow i hope she reads our comments....This case is obvious lyme if you ask me.
1734603 tn?1310425995
I've had several blood tests that indicate no bacterial infection such as meningitis or lyme disease.  I will speak to my doctor about this though.  Thanks.
Avatar universal
you have to take the lgenex test only given by a lyme doctor... the elisa and or western blot will miss it most of the time, if not all. The reason is becuase your body will stop making antibodies after a while because your immune system thinks it won. But the lyme is hiding and your immune system cant find it and does not know it is there, and therefore will stop making antibodies and ofcourse they will not show up in your blood test. a lyme doctor may give you antibiotics for the lyme which will stir up the immune system to attack what the antibiotics are attacking, and then retest you, which will then usually be positive for antibodies.. I am telling you now, no standard medical doctor is gonna figure this out, neither will an infectious disease doctor, trust me. they will look at you like you are crazy. Hope this helps you.
1530171 tn?1448133193
Hey Kait,
The suggestions you've gotten here are great.
Please avoid the standard tests and standard doctors. They  are clueless.
And your life will get into Limboland, because of this.

Get in touch with Dr. Garth Nicolson (immed.org).
He's an expert on Pathogenic Mycoplasma infections
and you must do so as soon as possible.

The testing is very specific, ( many labs that confirmed such infections have been suddenly shut down???). In the initial stages of Lymes and Pathogenic Mycoplasma infections
you have a greater chance to get treated successfully. Once your immune system is taken over by these conditions, it is very difficult to get cured.
The treatment involves specific antibiotic administration which is bactrerio-static and not bacteriocidal.
It depends on the patient's immune system to eventually discover the offending pathogens
and destroy them.
Please research all this and take proper action soon!

Avatar universal
God, I hope she reads this.   To all above, thnx for getting the word out on the Autoimmune section.  Sooo many people are lost in missdiagnosis.  They need to be aware.
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