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Fluttering sound upon closing eyes and looking at the edge of my peripheral vision

So, I'm 31 was in great shape, 6'0", 160lbs, eat healthy, don't drink/smoke/drugs, worked out all the time, played contact sports, yada yada yada. I've been dx with everything from ankylosing spondylitis to fibro to sarcoidosis and everything in between. I've been going through serious chronic pain, particularly in my neck, along with muscular pain, and the symptoms below. The one weird symptom that correlates with the increasing severity of these symptoms is a fluttering sound in my ears, not nonstop, that I get when I close them and look just out of my normal range of vision. I feel it almost start in my eyes and flow through my head from front to back.

All of these symptoms came on after, questionably, being infected with Mononucleosis. Although, I know that the virus can cause a lot of symptoms, although this has been going on for around 2 1/2-3 years so I'm not guessing that is what is happening right now, maybe caused by? I have seen so many doctors and have been in the hospital all while waiting to continue my education and go back into life as a functional human being. So, if any of this seems like something you've heard of turning out to be _________ disease, condition, syndrome, or whatever in someone you know/have heard of or yourself know about I am all ears. I'm saying that b/c it affects my ability to work, go to school, and a whole lot more, and I'm in the process of finding out what is definitively going on along with how to treat it besides using pain medication, and a ton of medications.

My general symptoms are:
dull achey pain in my muscles throughout my body(worse towards my shoulder blades and neck/facial area.
Nausea/Vomiting out of no where when I'm not sick
osteophytes in my sacrum and neck
clenched jaw/grinding teeth
sometimes what most would refer to as "brain fog"
Cloudy urine(extremely)/ Sometimes foamy
Stool is all over the place(goes between hard and small to about to fall apart w/ mucus) sorry about the details
extreme pain in the right side of my neck just below the base of my skull
vascular headaches
feeling pressure in my face(eyes, sinuses, jaw, head)
lymph glands are sore sometimes
bloating/gassy
cold hands and feet
body temperature usually low(95.3-97.9)
hot/cold flashes
lower back pain(right where my coccyx would be I believe)
pop in my neck when I lift objects above my shoulders

These symptoms are all somewhat mild except when I have these "episodes" that always start with very cloudy urine and some aches the first day. Second day pain is increased and vomiting may follow. Then I may be in bed with pain, fatigue, nausea, lack of appetite, and sometimes shortness of breath. I've had an MRI of my neck and Brain, bone density scan, tons of bloodwork, an endoscopy, xrays, etc. There was some abnormality found in my neck that they think may be causing the pain but have no explanation for anything else. Lately I've been feeling this pain in my lower back that when I feel it, I need to get into a position that helps or it almost makes me crazy from the pain. I'm likely going to the Mayo Clinic soon but figured while I'm waiting I'd ask anyone who'd listen. I can tell you a few things that have happened during my life that may have some importance.... I had pretty bad head trauma when I was a child, heart murmur, a club or "trigger thumb", I've worked with hundreds of exotic animals(reptiles, birds, large mammals, small mammals, etc.), worked with rats, worked in the rainforests of Central America, had lots of tick bites, had many injuries from sports and skating, had a cracked tooth with an abscess removed that I hadn't been able to treat for a few months(had surgery awhile ago) , and had gotten bit into the bone by a kinkajiou. I'm not sure if any of those help but figured I'd mention them. Below is my abnormal tests I can remember off hand.

The weird/abnormalities in my blood work are as follows:
-ACE test is high to low and visa versa
- 3/4 of my tests said I have anemia
-1 elevated liver enzyme test
-Testosterone has been low
-Cortisone is low
-Autoimmune flag
-Positive EBV IGG antibodies
-Rheumatoid factor was high twice(only checked twice)
-Low potassium
-High sed rate 2x

Thanks for reading and I apologize for my long post. This has been running my life for such a long time I just want to get back to normal and stop feeling like a burden to everyone in my family and to my girlfriend. Hope everyone the best and take care.

Matt
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Comments

  • You certainly sound like you have been having a rough time and I really hope you do get to Mayo soon and it is worked out. I am no dr so this is certainly not professional advice, just first impressions. Two things - I wouldn't assume that all the symptoms relate to one condition. As my friend with cancer said, one of the most annoying parts was that it didn't mean that her arthritic ankle suddenly was fixed or she didn't get a cold. So it might be a case of a couple of things or more happening and trying to link them all just makes the picture more difficult. The only other thing is that I have atypical migraines which means that I rarely get the normal l migraine headache - I get weeks when I have balance problems and trouble walking, I get nausea and diarrhoea, i get tinnitus and visual & sound disturbances, and then every couple of years collapse with symptoms so similar to a stroke that even the ER room worry they can't distinguish between the two without a CT. Atypical migraines are more common than people think and are very hard to diagnose as well because the symptoms vary enormously and in ways you don't first expect until you remember that the brain controls so much, so i don't know if that has been checked out to take into account at least some of the symptoms. I hope you get the help you need very soon and the answers that will allow you to get back to life.
  • You certainly sound like you have been having a rough time and I really hope you do get to Mayo soon and it is worked out. I am no dr so this is certainly not professional advice, just first impressions. Two things - I wouldn't assume that all the symptoms relate to one condition. As my friend with cancer said, one of the most annoying parts was that it didn't mean that her arthritic ankle suddenly was fixed or she didn't get a cold. So it might be a case of a couple of things or more happening and trying to link them all just makes the picture more difficult. The only other thing is that I have atypical migraines which means that I rarely get the normal l migraine headache - I get weeks when I have balance problems and trouble walking, I get nausea and diarrhoea, i get tinnitus and visual & sound disturbances, and then every couple of years collapse with symptoms so similar to a stroke that even the ER room worry they can't distinguish between the two without a CT. Atypical migraines are more common than people think and are very hard to diagnose as well because the symptoms vary enormously and in ways you don't first expect until you remember that the brain controls so much, so i don't know if that has been checked out to take into account at least some of the symptoms. I hope you get the help you need very soon and the answers that will allow you to get back to life.
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