Avatar universal

Strange symptoms for over a year...

History:  I've had some very bad symptoms that started April of 2011.  The initial presentation seems to be a clue to the diagnosis, but the symptoms changed dramatically, that it often seems to confuse things.  Basically, in early April, I started getting chest pains on the left side off and on.  There seemed to be no way to predict when they would come, and they were of the musculoskeletal type.  Shortly after, my left leg started aching real badly and felt very tight permanently from the lower half and down into the upper foot.  Also, about this time, I started getting what felt like "heart fluttering" constantly on my left chest.  But, it wasn't in sync with my heartbeat.  It makes me feel like my muscles are internally jumping inside or something, actually shaking my body slightly.  Finally, I got extremely disoriented, to the point where I couldn't sit at the computer for more than a few seconds without feeling sick and like I was going to fall out of my chair, like my head was real heavy.  These symptoms went on for about 2 months and began to subside largely, except for the feelings in my leg.  But, in place, I was left with bad breathing and gastro issues that still have no explanation to this day.  These are my current symptoms:  I have a lot of dysfunction going on with my nose, throat, chest, abdomen, and left leg.  My abdomen feels extremely tight around the upper part and ribs. Sometimes, it burns very badly all day.  The area just under my sternum to the left, middle, or right feels like some object is putting pressure on it.  My diaphragm feels pushed up very high in my chest like everything has shifted upward from my abdomen.  I can't take deep breaths anymore because of this.  Overall, my abdomen burns badly now, front and back, feels bloated, but doesn't look bloated, and feels extremely tight all around now.  I get constant gurgling sounds from my stomach during breathing, yawning, swallowing air, swallowing in general, and even just moving.  It's like non-stop.  Before, I would nearly never get these symptoms.  Due to my abdomen pressure, it's very difficult to burp, and I hear a large gurgle and turbulence when I try to.  Like, if I just swallow a lot of times, I'll either hear this large column of air seem to go back down my throat, or there will be this intense pressure in my throat for a few seconds which makes me want to burp.  If I fight it, it slowly trickles down into my stomach and I hear the sounds as the throat pressure slowly loosens.  My throat is extremely dysfunctional now.  It feels very tight, as if it is being squeezed off.  Burping is difficult now and comes up with either heavy turbulence, or gets blocked before making it up.  Also, every time I burp, my nose seems to block off.  I feel like my throat is blocked off and when I breathe in, especially through my nose, it feels like a sick heavy resistance as if my throat is sucking inward on itself.  Sometimes, I feel something shift under my sternum and it seems to affect my throat.  This usually happens after a deep breath or position change.  I can sometimes almost hear the turbulence and restriction of air when I breathe.  My nose is completely messed up now.  It feels like I'm fighting against a sick resistance when breathing in and it's not expanding my chest like it should.  Nose has bad sense of smell now, feels like it's breathing in liquid repeatedly, gets flooded with burps or food "fumes" that I swallow.  But, it's not actually messed up itself, it's being messed up by something else.  Everytime I breath in, throat ***** in, stomach growls, etc.  Gurgles of air are felt in my nose and throat a lot after swallowing things like water.  Nose tightens in accordance with abdomen it appears.  These are things I literally never recall having before in my life until recently.  It's almost like there is this diversion of stuff from my esophagus to my nose and vice versa.  It seems to randomly feel better for brief periods, seemingly related to my abdomen feelings or how I'm laying, say on my side vs sitting.  It's like I feel this air bubble popping in my nose and it opens up.  But, later on, it's back to bad for most of the day.  My left leg aches.  This was one of my initial symptoms.  When it's not aching as much, it feels extremely tight around the ankle and foot area.  When it's aching, it's mainly the lower half.  This is the one oddball symptom that I can’t explain.  But, it would seem it has to be related to my overall problem as it would be too coincidental to come on at the same time.  Most of all, my breathing is completely shot due to these symptoms. I often get very smothered breathing.  My throat and nose seem to get worse and worse over time.  Doing exercise causes my breathing to get much worse like I have asthma, but more from my throat and nose area, not my chest.  My leg aches worse and worse while walking too.  It’s just my left leg though.  But, it aches all day mainly, even when I don’t walk.  Some other things I have noticed is it sometimes aches worse for a few seconds when I take a deep breath.  I've basically been through the ringer with local doctors and the Mayo Clinic here in Florida.  After tons of tests, the only thing that could be found was Nutcracker's Esophagus, which the doctors feel isn't the primary reason for my symptoms, namely because it shouldn't cause true SOB, and it's typically episodal with bad chest pains, whereas I have more constant symptoms 24/7 rather than moments of bad chest pain.  Anyway, they put me on Nortriptyline for a few months since it supposedly helps with esophageal spams.  But, it didn't really make much difference for me.  They said alternatives are things like blood pressure meds and botox, but noted that they don't believe this to be my real issue.  All in all, based on my initial symptoms, I strongly feel like the only thing that could possibly cause this medley of symptoms is neurological in nature.  I mean, why would pressure in my abdomen affect pressure in my nose and throat?  It's very odd.  When I use the bathroom, for instance, my nose seems to tense worse all the time.  When I have cramps, my nose feels worse too.  It's like my nose and throat feel like my abdomen does.  The other reason I think it's neurological is because of my leg.  It's the one oddball symptom that doesn't seem to match others, and obviously a neurological reason for leg pain is the most likely if vascular has been ruled out I feel.  I did have a known problem for a few years called a small intestine malrotation.  I decided to have surgery for it at the Mayo Clinic, but turns out it wasn't my problem afterall.  The upside was they looked around laparascopically and didn't see any real issues.  The downside is that I wasted my time doing surgery for something that's probably completely unrelated to my symptoms!  I don't know, but this is really bothering me.  I wake up knowing that once I sit up, I'll feel all this pressure in my upper abdomen, will suddenly have to burp, and my nose and throat will feel messed up all day for no known reason.  I did find this Vagus nerve can cause a lot of strange symptoms and seems to tie in to the multiple components of my problem.  But, noone seems to want to entertain that notation or has anything they can do about it anyway.  Has anyone here had anything similar to this or have any ideas about what I should do next?  The doctors are basically tired of me everywhere I've gone...
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1756321 tn?1547095325
The MS hug came to mind reading your question.

From the article - Multiple Sclerosis “Hug” or Girdle-Band Sensation...

"Like many MS symptoms, the “MS hug” feels different for different people – it also feels different in the same people on different days or at different times of day. It can be:

As low as the waist or as high as the chest; rarely it can be felt as high as the shoulders and neck
Focused in one small area (usually on one side or in the back) or go all the way around the torso
Worse when fatigued or stressed
Present in “waves” lasting seconds, minutes or hours or can be steady for longer periods of time
Described as sharp pain, dull pain, burning pain, tickling, tingling, a crushing or constricting sensation or intense pressure

How Severe Can It Get?

Some people experience difficulty breathing or painful breathing, so severe that it is often perceived as a heart attack or panic attack.

What Medical Tests Will be Performed?

Your neurologist may want to run an MRI to see if you are having an exacerbation. Often, tests are also done to rule out other things, such as heart problems, gallbladder problems, lung disease, gastrointestinal disorders or inflammation of the cartilage between the ribs."
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Avatar universal
Your symptoms could possibly be MS, but since you have had them continuously for nearly a year and a half, I think it is worth getting tested for Lyme and Bartonella.  The combination of the two can cause significant neuro and/or GI symptoms. Many don't know this, but Lyme can also cause chronic sinus issues, among many other symptoms.  Both diseases are present in FL, but doctors have unfortunately been told in the past that it isn't there, as if ticks and their carriers somehow refuse to cross state lines.

I have both and I have had chronic and significant breathing problems, GI issues, neurological symptoms, and pain in my ribs, sternum, liver, gallbladder, and stomach.  

There is yet another tick borne disease that can also cause breathing problems: Babesia.

Many people test false negative for all of these diseases, so you will want to find an LLMD, a Lyme Literate Medical Doctor, preferably one associated with ILADS, who knows how to make a clinical diagnosis when appropriate.

You will want to get tested at IGeneX, a specialty lab that finds cases others miss.

This was really helpful for me. http://www.ilads.org/lyme_disease/B_guidelines_12_17_08.pdf

You might check it out to see if this seems to "fit" your symptoms or not?
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Avatar universal
Hi.  Thanks for writing.  I had a few Lyme tests, but not by any experts.  

How did you treat your problems?
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