Doctors can't find out what I have? Lymes disease?
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I've been having these weird symptoms since July and they just keep getting worse and worse and no one can find out what it is. I've been to the ER a whole bunch of times, my primary doctor, a neurologist, and recently an ENT. I'm just going to make a list of all of my symptoms in order and if anyone has any idea what this could be or has felt any of this stuff please let me know. I'm going to start with my very first symptom.
- tingling all over body, shortness of breath, chest burning and itching (diagnosed a couple of times as heartburn and GERD)
- nonstop chest pain (this is still going on)
- burning in throat (heartburn)
- loud crackling and gurgling noises coming from my throat (this is still happening and no one knows what it is but it is ANNOYING)
- loud crackling/fizzling/grinding noises in my neck (has progressively gotten worse and worse to the point where the noises keep me up at night)
- (MY ABSOLUTE FAVORITE ONE) feeling like there's water dripping inside of me. first it started in my stomach during the summer and then it moved on to my legs and my head. this one keeps getting worse. now it's like I feel burning liquid crackling in random parts of my body out of nowhere. no one knows what this is either but it's driving me crazy and i honestly don't know how i've made it the past 4 months feeling this all the time. especially when i feel the burning in my head.
- Difficulty swallowing, feeling bloated, lost 10 pounds in one month bc i could barely eat
- feeling vibrating in my chest/legs???
- extreme weakness/heaviness in my legs & body, could barely walk, lightheaded/faint
- tingling in feet and hands (one time my hand was shaking and I felt the burning hot liquid inside of it, it was red & i got scared & went to the ER but they found nothing. yay.
- twiching literally all over my body. right now it's mostly my eye but at one point my face wouldn't stop throbbing & i always have random twithcing in different types of my body.
- stabbing pains my head stomach and chest
- problems with my vision, this started last month, i constantly see stars, sometimes there's a black dot moving across my vision and a lot of purple floaters???
- tightness in my hands and legs/ swelling (or tenderness) in my arms and legs
- clicking when i blink my eyes, loud rubbing noises in my ears along with crackling and hearing something rubbing.
- feeling air rush out of my ears when i talk or just out of nowhere
- feeling my bones or muscles rubbing in my wrists and my legs. it's a really weird feeling i don't know how to describe but it sucks.
- around august one time my face went numb and so did my lips along with tightness in my forehead and the back of my head (doctors found nothing)
I think that's mostly everything. So I've had a lot of chest x rays done (normal), wore a heart moniter once, a whole bunch of CBC blood tests done at the ER, thyroid blood test, I got an EMG done (which afterwards I felt like I was gonna die, I was really faint and felt like my head got hit by a brick and could barely walk), brain MRI (2 lesions came up but they said it was inconclusive), i got a spinal tap done last month (which came back normal. i actually wanted it to come back not normal so that i could treat whatever the heck is happening to me), yesterday I got a thryoid ultrasound done b/c the ENT refferred me. They did a hearing test and said I had negative pressure in my ears but apparently that means nothing.
At first I was freaking out bc i thought I had MS but then I started looking up Lymes disease, doing a lot of research on it, and i 100% thought i had it bc all the symptoms are the ones I have, but the spinal tap came back normal and i don't know what to do anymore. I keep getting worse and worse and no one can diagnose me. If anyone has any input at all I would appreciate it. Can you have lymes disease and have it not show up on a spinal tap??? i really dont know what else this could be.
1 like, 17 replies
sharla410 yashie765
Posted
I have some very similar symptoms to yours. My worst symptoms, though, are excruciating pressure headaches and severe nerve pain. I will sometimes pace the floor for hours, in wracking pain. My record is 10 hours. It's so horrible when you can't get a diagnosis. My hell has been going on since August. I need a spinal tap and haven't had one yet, but am hopeful. When you had your spinal tap, did they check your opening pressure? I'm curious because sometimes people can have intracranial hypertension caused by whatever illness we might have. Or you can have it by itself and it can cause horrible symptoms all by itself. I'm having my eyes checked to see if there's any optic nerve swelling. But you can have IH without eye swelling. I'm looking into this whole IH thing as well as other things, like you. I basically want to have every test I can because I'm in such pain and things are getting worse for me, too. A doctor suggested Lyme disease to me, too and I had the Western Blot test which was negative. I've read, though, that these common tests can be false negatives and it also depends on which lab does the test. I would also look for a Lyme Literate Doctor (one who specializes in Lyme disease cases), which I'm in the process of doing. Unfortunately, too many doctors today are only relying on one or two tests that may "say" they're negative but aren't always conclusive. I had some inconclusive abnormalities on my MRI, too. I'm going to have more than one doctor read my MRI. Too many people out there are being dismissed by doctors saying things are "inconclusive", etc.. Inconclusive to me, means there may or may not be a problem. That's just not definite enough to me because it's my life at stake! Don't give up, do your own research and keep searching. Don't let anyone dismiss you or your concerns or questions. There are great doctors out there, but they are busy, run a few tests and send you home. And we have to live with the pain. Find those doctors who will really listen to you. Keep us posted on your progress and am so sorry for your pain. I can totally relate. It's hard enough to be in constant pain, but also fear and especially not even knowing what's wrong!