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Just looking for an opinion on my neck pain

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, TMJ, degenerative disc disorder, osteoarthritis, ADHD, GAD, sleep apnea, fibro, sarcoidosis and everything in between. I've been going through serious chronic pain, particularly in my neck, along with body wide muscular pain that is worst along my shoulder blades, along with 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 current medications are:
-75mcg Fentanyl patch
-60mg Cymbalta
-1-2mg Klonopin
-flexeril
-Adderall
-300mg wellbutrin

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

  • Dude you don't need mayo, You need Dr House !

    You south side chicago by chance ?

    Mayo might not be a bad idea, I been there, They can do a full work up on you there in a few days vs most doctors anywhere else it might take a lifetime,
    Flexicore ADR 2004 resulting nerve damage l4l5 Fusion 2006 same level, 2009 hardware removal with lami !
    2012 scs implant ,
  • Lili_InuLLili_Inu Posts: 633
    edited 02/04/2013 - 1:42 PM
    I had many of the same symptoms you have listed prior to my surgery 2 years ago. These are the ones I had from your list:

    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 neck
    clenched jaw/grinding teeth
    sometimes what most would refer to as "brain fog"
    Cloudy urine(extremely)
    extreme pain in the left side of my neck just below the base of my skull
    vascular headaches
    feeling pressure in my face(eyes, sinuses, jaw, head)
    bloating/gassy
    cold hands and feet
    body temperature usually low(95.3-97.9)
    hot/cold flashes
    lower back pain (mine was around the waist)
    pop in my neck when i move it in a particular way

    I, too, had many injuries as a child: fell out of monkey bars landing on my face, got hit on the face with a hockey stick, etc. Loved working out at the gym, running and pretty much any type of sports. Due to my current condition, I can no longer do the things I enjoy. It's sad when I have the endurance to do much more than my body will allow. Have you tried physical therapy or any conservative therapies? I still go to the gym, but the exercises I do now are to maintain my spine so I am not in terrible pain.

    Some of my symptoms are still there, but much better. I really do believe that some of these symptoms are from compression of the spinal cord. It's best to seek a spine specialist and have the proper tests done to rule out other possible diagnosis. I wish you much luck!
    2011 ACDF C5-6 for Spondylosis with Myleopathy
    2012 L4-5 herniated disc and hernated disc at C4/5 2013 Taking Amitriptyline for headaches
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  • My MRI did not mention anything about the severity of compression on the spinal cord, so till this day I have no idea how bad it was. I can tell you that I didn't want to wait for the symptoms to get worse. Just before the surgery I was getting recurrent UTIs, balance issues and started feeling like my feet didn't belong to my body. None of the surgeons I met with said that I needed to have surgery immediately, but they did recommend it.

    I think what broke the camel's back was my daughter slammed the door in my face one day and from then on things started to deteriorate. Honestly, I can't say for certain that was it, but that's what I believe to have caused things to go downhill. Everyone's symptoms present differently. I had severe foraminal stenosis, but I did not have severe nerve pain shooting down my arms or in my hand. I did have severe burning in my left traps, rhomboids, neck muscles and back of the head. My headaches were so terrible that I could barely get out of the couch. It was the spinal cord compression symptoms that was the most worrisome.

    Now 2 years out of ACDF at C5/6, I still have some intermittent nerve pain in the arm/hand. The worst part is the spine muscles and so I have started to do yoga and pilates. I tried yoga and pilates before and wasn't ready, now it seems to be helping. Like I mentioned before, everyone has a different presentation of symptoms. It's hard to compare my situation with yours. I hope my story is useful!
    2011 ACDF C5-6 for Spondylosis with Myleopathy
    2012 L4-5 herniated disc and hernated disc at C4/5 2013 Taking Amitriptyline for headaches
  • Do you have weakness in both legs or just one? I have been strengthening glute muscles and core muscles around lower back. My right leg, glutes, obliques and quadratus lumborum are weak. Not sure if it's from L4, but because of instability of my lower hips, my entire spine is out of alignment. This is my biggest issue now and generator of pain. In the last week, I have been massaging with tennis ball and strengthening with resistance bands. Slow, but there is improvement.

    I have given up on physical therapists mainly because they do not do a thorough enough assessment of each patient. I was given a bunch of lower back exercises when most of my weak muscles were not in my lower back. My own research on the internet has brought more clarity and answers to my current condition. You do know your body better than anyone.

    Does strength training cause too much pain for you to continue? It took me literally over a year to gain back most of my strength in my left upper back/shoulders/arms. The muscles still spasm, twitch and pain comes from no where. Sometimes I still get weakness there. Keep searching for the right doctor to help you. There has to be a reason for all your symptoms. Good luck.
    2011 ACDF C5-6 for Spondylosis with Myleopathy
    2012 L4-5 herniated disc and hernated disc at C4/5 2013 Taking Amitriptyline for headaches
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