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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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@supernat10 Welcome to MayoClinicConnect! I’m sure the members will be able to help you. First off, I’d like to say that from everything you’ve written, you maybe should see a gastroenterologist to be evaluated for GERD-gastro esophageal reflux disease. And second, you should get a complete exam from an ophthalmologist for the double vision. Many ophthalmologists can recognize autoimmune diseases from an eye exam. You want to find one who is connected to a good hospital.
Have you seen a rheumatologist? And a lung specialist for your breathing problems? A good rheumatologist can probably put all your symptoms together—they are most knowledgeable about autoimmune diseases
https://autoimmune.org/resource-center/diagnosis-tips/. Read these tips and try to make some sensible lists for your next appointment.
Do you think this is a good starting point? If you can get an appointment with a doctor, what would you like to ask him?
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5 Reactions@becsbuddy offered some great suggestions, and I hope you’ll hear from others as well.
One thing that stuck out to me was the Nexium. Did you try stopping it cold turkey? Since it’s a PPI and you’ve been taking it so long, you’d definitely need to taper it slowly, maybe very slowly in your case because stopping it suddenly causes rebound symptoms, especially when taking it long-term.
I know it may be a smaller thing of all the things you’re struggling with, but if or when you feel ready to look into it, there are a few discussions on Connect about tapering off PPIs that may be helpful and also tips you can find online if you haven’t tried that yet.
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2 ReactionsSupernat10, Several things come into my mind for you. Please see another Gastroenterologist for a 2nd opinion. I think of the following as I have these and some of them sound like your symptoms:
1) A hiatal hernia
2) GERDS....Chronic.
3) You have to wean yourself off the PPI's (Nexium) or it can worsen reflux. You may even have to switch meds to another PPI if you have been on Nexium a long time.
4) I take 1 Protonix daily and then 1 Pepcid AC at night. It has helped tremendously. I also use Gaviscon (over the counter) for breakthrough pain during the day or Ginger Chews by Prince of Peace (Amazon).
I know of people who have GERDS and they think they are having a heart attack and have gone to the ER. It can be quite painful. Try not to eat heavy meals, nothing after 6:30 p.m. except an apple or skinny pop popcorn, elevate the head of your bed, do not wear a tight belt around your midline, losing extra weight has helped me, stay away from onions and citrus fruits such as pineapple, lemon and lime. You have to see what sets you off.
5) There is an inflammation in the chest well called costchondritis that is very painful. This is often missed by a doctor. This is treated usually with Advil. It can be brought on by exercise such as swimming.
6) COVID worsened reflux for me. Have you had COVID?
I know I haven't given suggestions for everything that you battle, but, these come to mind. Praying for you to get some answers and get better. I am so sorry you are battling this. Blessings.....
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5 ReactionsI would also suggest getting a spinal MRI as some of the symptoms you are experiencing could be due to lumbar or cervical spine abnormalities. And do drink lots of water. Watch your diet and exclude citrus and tomatoes, coffee and tea as these are GERD triggers. Peppermint is also a GERD trigger. Being overweight can exacerbate GERD symptoms so if this is an issue, try to keep your weight in the ideal range.
I agree you should see a gastroenterologist to get your digestive issues resolved. Something other than Nexium might be more helpful to your particular issue.
I hope you are soon feeling better. I'm sorry the docs you have seen so far have not been able to resolve your problems. Hopefully the next doc you see will find the answer.
Donna
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2 ReactionsI have tried stopping cold turkey in the past, but not any time recently. When these episodes hit me with the chest pains, they don't seem to be related to me changing my Nexium dose. I'm very consistent with taking it each morning. But great question. Last year, I did try to taper off of it, and the interesting thing is that I don't get reflux, nothing comes up, but my stomach just hurts. I started it when I was overweight and eating poorly, but I'm in good shape now and eating properly. After doing some research, I think it is due to my stomach lining being essentially gone at this point. The lining to protect my stomach is built up by acid, and after having little to no acid for so many years, it has withered away (is my understanding). I tried taking L-Arginine for a while before tapering, but no luck. I also took apple cider vinegar, which controlled the pain to a degree, but after being off for over 6 weeks with continued pain, I ended up just getting back on it. A few weeks later, I had an endoscopy, and my gastro said my esoph and stomach looked great, except for a polyp that was removed from my stomach (he said was normal). I'm fine with the fact that I'm probably stuck with an acid reducer at this point, except my concerns over long term usage and some links to Lupus with Nexium, which my doctor says are non-existant, but plenty of papers indicate otherwise.
I have another appointment with my gastro next month to at least attempt to use a different product, to see if it makes any difference.
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1 ReactionAppreciate the prayers! I've had so many issues, I forgot to mention covid. My symptoms have been around for 10 years (all started after I had a double hernia mesh surgery, which I had pain from for 8 months and was put on fibromyalgia medicine for, which I stopped taking a long time ago), but the pain and general gnawing feeling in my stomach started a few weeks after I had covid 2 years ago, and have been up and down ever since. It was also after covid when several of the symptoms I mention appeared more prevalently, specifically my eye issues.
I have had GERD since my 20s, and regularly visit my gastro, and was scoped last year. Just before the scope, I was having the same gnawing pain in my stomach, and he said everything looked great (his words). The gnawing continued after. I suspect it's more of an issue with my esophagus, but no one has a clue. I consistently take my meds, and never have reflux in the sense of anything coming up, never coughing or throat soreness. I'm 5'7 and 155 lb, and don't eat after 7. There really isn't a reason for it that I can pinpoint.
I would love to wean off the PPIs and have tried in the past, but it's just never been successful. I tried 1 nexium 1 day, 2 pepcid ac the next, for a month, then started replacing nexium with pepcid, then weaned off pepcid, was also supplementing with apple cider, but I continued to have pain daily. No reflux really during this time, which I think is odd. Perhaps it was coming up just far enough into my esophagus to erode it again.
I have considered costochondritis, it seemed very likely due to how it hurts on the outer walls, closer to my armpits, and when I breath deep, and when I have these upticks, I take advil to address it. They eventually go away after a week or two and won't come back for a while. I've never been able to confirm it though, xrays are always normal. I've noticed the chest wall pain on my left side, when it comes in the middle of the night, will throb for an hour or more, until I get up and drink a sip of water. Within seconds, it's gone (though it does come back later). I think that must be related to my esophagus and hiatal hernia possibly.
I woke up this morning after sleeping well for the most part, except some minor pain at the base of my neck again, but was pain free. Then I started feeling this sensation like something pushing on my lung, like thumping on it, and like it was going to take my breath away, happened about 10 times, and I finally drank some water, and it stopped. Since I have muscle spams visibly on the outside, I just wonder if they are also inside and hitting my esophagus or hernia area. It's so hard to describe this stuff to a doctor, and I've been to dozens and tried. It usually ends up with them telling me I have anxiety. Which I don't...I can see how someone might get it after dealing with this so long though!
Thanks for the input, it really is appreciated!
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1 ReactionThis is the one thing I've not been able to get from my doctors. They focus on my stomach, which I don't blame them for, but I've asked to have my spine checked, and the multiple spine doctors I've been to just sent me off to physical therapy that didn't work. Appreciate the input though, perhaps I should push for this harder.
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1 ReactionOh, and regarding seeing another gastro. That's basically impossible where I live. They are all in the same network, and they refuse to see anyone that is a patient of someone else from their network. Talk about a dereliction of their oath. It is what it is, and I've even written my useless congressmen to suggest they outlaw this, but I guess my pockets aren't deep enough to get a response that has anything to do with the question I asked.
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2 Reactionssupernato10, I am so sorry to hear that. Most of my doctors will allow one transfer to another doctor in the group. I don't understand that for you. I am so sorry. God Bless You.
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1 ReactionA good plan to stop nexium and get a script for another
acid blocker. There are other options and what if nexium
is a contributing factor.?
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