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Hi all, I've been struggling with illness for a few years now with no proper diagnosis. The issues I have come and go. I'll be going along for a few months without any serious issues, and then they hit me all at once. I do have chronic issues as well, but no resolve. Just thought I'd see if anyone had suggestions for what to do next. I've been to every doctor, had every test, MRI/CT scan of my entire body multiple times.
To start with the facts, I'm a 45 yr old male, had reflux since I was 20 and have been on a single daily dose of nexium since then. When I stop, my stomach begins to hurt, and I don't mean burn from acid, I mean painful within hours of missing a dose. I've tried many times to quit. While there's no real evidence, I suspect a relation to being on this med for over 20 years.
One issue that has been seemingly getting worse is my double vision at distance. I only realized I had it about a year ago, but sometimes it is so bad, it's nerve wracking to drive, especially when looking off to the sides or up high (rear view mirror), where it gets much worse. The double vision is pretty much constant, some days worse than others. I was having considerable muscle weakness during one of my episodes last year, so I went to a neurologist about that as well as my eyes. They did an MRI, but found nothing. (actually, there are 3 spots on my brain MRI, which showed up in about 2017, but the surgeon felt they were likely there from childhood, and they've never gotten bigger). He tested me for several variations of myasthenia gravis which were all negative.
The episodes I get periodically, usually begin with a throbbing chest pain on my left side, just under my armpit. That pain can turn from throbbing to a constant soreness for days. This started over a decade ago in some form. It is now also on my right side and sometimes in the center of my chest. Usually a sharp, stabbing pain, and either with my heart rate or spasming, hard for me to tell, but it's not solid. I "believe" it's somehow tied to my esophagus, because it will sometimes wake me up in the middle of the night. I used to take a baby aspirin when it happened, thinking it was a blood clot or something, and it would go away. What I realized was just drinking the water caused it to dissipate, no aspirin needed. I've been to a cardiologist and the ER on 4 separate occasions, did have an elevated D-Dimer at the first ER visit in 2017, but they did an angiogram CT, and I was clear of blood clots. Cardiologists have done echos and 48 hour take home heart monitor, all normal.
My most recent version of this pain has seemingly moved. The throbbing was in my neck on my left side at the base, just next to my carotid. It throbbed all night, and the next day, the pain moved into the top back of my head (along with my neck still). Another ER visit, but they cleared me (chest xray, bloodwork, ekg). The following evening, I started eating some sushi, and within a few bites, I had a deep central stabbing throbbing chest pain again, for about 10 seconds, that was a level 9 and left me shaking for 10 minutes. After that episode, nothing for over 2 weeks. Fast forward 2 weeks, and back to the chest pains in the left/right walls near my armpits again. Also some random pains near my groin, in my lower right abdomen, in my arms.
Since the episode a couple of weeks ago, I've also had pins and needles in my right pointer finger, though it has mostly subsided. And a more generalized minor numbness in my left hand. I've also began monitoring my blood pressure, because the cardiologist asked me to. And this is something I've checked for a many years, and it's always been right at 120/80. The last week, it's been closer averaging to 100/70, with low of 95/66 and all under what I consider my normal bp. I noticed this "lower" BP also happened last time I had these chest pains start up.
When I had a CT a couple of years back on my brain for the neuro, they detected several thyroid nodules. I had those tested, and they were not cancerous. At the same time, my lymph nodes ballooned bigger than I've ever seen. They made me come back a month later, and they were back within normal range.
My right eye does droop a little, which is why I thought it might be MG, especially with the fact that I get muscle weakness sometimes for weeks on end, have difficulty standing after sitting for a while, feel wobbly, muscles are just generally sore. But those tests were normal.
At one point last year, I had to go to the bathroom every hour for over a week straight (literally 24 times a day), and had multiple urine tests, all come back normal. This happened to a smaller degree for a couple of days a few months before that. Nothing since then though.
I had a sparkly blue ball appear in my right eye, which then turned into a yellow circle in my vision for several days before turning gray and disappearing. They looked for floaters, but couldn't see any, and told me that must be what it was.
I have a pain in the front left side of my head when I receive any kind of IV. It burns as the liquid moves through. This was one of the reasons for my Neuro ordering a CT, but it was clean.
Probably unrelated, but more muscular issues. I threw my lower back out last year picking up something that I've picked up many times before, and have not been able to lift much of anything since then. I had dual inguinal hernia surgery in 2013, and also have a hiatal hernia.
Last year, my stomach was hurting so bad from just eating normal foods, I had an endoscopy done (and colonoscopy because of my age). All normal, but even now a year later, I have pain with my 2nd or 3rd meal of the day. Nearly instantly when eating. It's not severe, just a gnawing/minor pain, so I can live with that.
Lastly, I'll periodically get muscle spasms all over. Just before my neck started throbbing, I was having muscle spams in that exact spot several days before.
Another issue I deal with is difficulty taking a deep breath. No trouble breathing normally, just taking a deep breath like a sigh. I am very active, and don't lose my breath. This has been going on for many years.
I feel like I'm at my wit's end. I know my days are numbered, but I just want to know what's going on, what to avoid, how to process all of this. I'll go months feeling "okay", and then I'm slammed back into painful nights and days if not weeks of pain and anxiety not knowing what's around the next corner, running to multiple doctors with the same tests over and over again showing nothing wrong.
Thanks for listening.
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Have you ever heard of crepitus?
"In orthopedic medicine and sports medicine, crepitus describes a popping, clicking or crackling sound in a joint. Joint popping sounds – what some may call bone cracking – may mean that air is moving in the joint, which is usually harmless."
I would also be concerned about taking PPI's for years. They are now being associated with dementia in several large medical studies. You could ask about sucralfate. That is like a band-aid for your stomach that you can even take when needed unlike PPI's that take a few weeks. I had gastritis with some bleeding and that is what my GI told me to take. I've taken this on and off for years and it works really well for me.
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3 ReactionsHi,
Ever been check for a neurological disorder?
A lot of your symptoms can relate Dysautonomia (ANS), and a lot of other things. It is the connection between organs and muscles to and from the brain, corrupted signals cause many of the symptoms you are having. Being random in nature it is hard to get diagnosed. Mine was picked up by the slowness of my eyes adjusting to light. Then all the symptoms started making sense. Painful stomach, abdomen cramps, blurred vision, vertigo and unsteadiness walking and a lot more, just the tip of an iceberg. I now refuse to go to ED with each chest pain, yes it could be real but usually for me it is ANS doing it's thing. My BP is uncontrollable despite medication, it does it's own thing and keeps it at the upper limits then suddenly drops to almost normal for a few hours. I can tell what sort of day it is going to be by my BP check each morning.
Worth checking it out. After 13 years of this BS I now have a handle on why the symptoms thanks to one alert ED doctor.
Cheers
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2 ReactionsI have not, and haven't heard of this before. Thanks for the info. I'll be sure to bring this up with my Rhemy at my next appointment. Sorry you are going through this so long. I am right there with you, been to the ER about 5 times now, and I'm fighting the urge more with each new symptom. My BP is kind of up and down. I've noticed periods where it was in the range of 95/65 and other times 130/95, much more rare for mine to be high, it's usually close or under normal. It may stay wherever it goes for a couple of weeks before returning to normal. I hope they find a cure some day and you can get some relief.
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1 ReactionI haven't heard of it, but my neck just started cracking recently. Don't really have that issue in too many other places, except my shoulder blade, which has popped for over a decade when I roll it.
Yes, I'm aware of the problem with PPIs including links to Lupus, although my GIs continue to assure me there's nothing wrong with them (I wonder what their cut is), and even had one GI yell at me to stop trying to get off of them unless I wanted cancer.
I've tried for years to stop taking them. Every time, I can get off for a few weeks to a couple of months, and it's pain the entire time, and I eventually just wind up back on them. Luckily I've only taken 1 nexium per day for the last 10 to 20 years, but also periodically stopping for a month or two at a time. But now I'm on 2 a day as of the last few weeks, because my acid issues seems to be worsening. I don't want the surgery, heard it's even worse for you. And I'm 5'6" and 155 lb, not exactly the prime candidate for uncontrolled acid reflux. I guess I'm stuck between a rock and a hard place on this one. And I wonder if my gastric issues are not maybe related to whatever is causing my other problems. My current GI did prescribe me sucralfate, and to be honest, it didn't do a thing for me. I also tried taking double pepcid AC max strength a couple months back, and it almost worked. I was still having a cold sensation after dinner, as if something wasn't quite right, some agitation from acid I guess. I "think" I felt a lot better on Pepcid overall, except for the fact that the acid was still gnawing at my stomach, which at this point I believe has no lining remaining after taking PPIs so long.
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1 ReactionHi elleng, yes I'm aware of the issues of Nexium. See my last comment on one of the other responses just after yours. I actually did try L-Glutamine for a while as well. It just didn't seem to do anything for me. I'll give your approach a try and see how it goes. What dosages do you use?
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1 ReactionThanks for your suggestion! I am sure, I've been checked out for TMJ. I have a gravel-like sound in my neck when I turn it normally. The cracking is much louder and more recent though, enough that it wakes me up at night sometimes. And, when I'm already awake and just turn my head, it feels more to the back of my neck.
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1 ReactionIt could possibly be bile acid reflux which doesn't respond with typical PPI treatment. If you look that up, you'll see the recommendations in dealing with it. Also, did you have a endoscopy where you were diagnosed Barrett's Esophagitis? This is the condition where they get concerned with acid and could, in some cases, lead to cancer?
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3 ReactionsI am surprised my GI hasn't ever suggested such a thing. I mean I guess their solution is always "take this PPI". Anyway, yes I have had many EGDs over the years, as recent as last year, and my esophagus and stomach were normal, and no pylori bacteria. No barrett's, yet anyway.
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1 ReactionHi,
I hope it is not ANS as it is a law unto itself with your body functions.
My BP is typically 180/104 but it can drop instantly to 123/80 and I can get a few hours of work jammed into them. I usually top out with 240/140 and end up waiting all day in ED for it to do it's thing. I know I can sustain tis from prior history, but life can change at a blink of an eye, so I have to not be too stupid about it just incase. I'm on mild BP medication to try and help with the excessive migraines the high BP causes. When I work vigorously the harder I go the lower the BP drops. It is controlling my digestive system completely from top to bottom, permanently. When I look back I can pinpoint to a serious bout of campylobacter, food poisoning which left me with zero kidney function for over 18 hours and subsequently I'm now CKD. Everything started from there. As I understand it ANS can happen from serious infections or down the diabetic track which lucky me I have both.
I have had temporary paralysis from the waist down, AF of the heart, anaphylactic episodes, Scrambled brain with it not being able to decipher the corrupted signal. I feel very much like a puppet on a string. I try not to let it interfere with what I do but have little choice as go on as normal as I can. On a real bad day I just sit it out unable to function safely.
Cheers
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