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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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@dlydailyhope Yes, I had a colonoscopy and endoscopy less than a year ago, and all was normal. Just before this, I was having pain when eating, and it has continued since then. He also did an abdominal CT before that. So I don't know how they couldn't see anything, but he said everything looked great, no gastritis or ulcers, etc. I had 1 polyp removed that was benign in my stomach. He thought it may be clogged lines feeding blood to the stomach, so I had an ultrasound right after for that which was clear. What @rashida mentioned about the gallbladder interests me, and I'm going to discuss with my gastro next month.
Also, because these issues always come in groups, yesterday the back of my eye or eye socket started having stabbing pains. I've had these when I move my eyes in the past, but this time seemed random. It was worse in some positions while trying to sleep than others, so somehow pressure from something in my neck or head made it worse. Also shooting pain on my heart beat, like every other pain I have...none are just solid.
I got some lab work back from yesterday, and my iron ferritin level was 1 point above the minimum threshold. Going to buy some more extensive iron tests for next week.
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2 Reactions@supernat10
I read some information about pain behind eye:
https://www.mayoclinic.org/diseases-conditions/optic-neuritis/symptoms-causes/syc-20354953
Chronic inflammation may impact iron levels. I was iron deficient for some time and not sure if this contributed to my small fiber neuropathy.
https://my.clevelandclinic.org/health/diagnostics/24979-total-iron-binding-capacity-tibc
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2 ReactionsI was initially thinking it sounds like this, but it only lasted for just over 24 hours. Came on weak at first, then climaxed at one point in the day, and then started tapering off in pain level, until it was almost imperceptable when the pains would come in. I didn't have any impact to my vision, although my eye felt "off", hard to explain, for a day. But mostly normal now (back to my normal double vision anyway...)
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3 ReactionsHi @dlydia I appreciate your input. How did your gallbladder appointment go? My primary care doctor diagnosed me with Fibro a long time ago, but I've never felt like it was accurate based on my symptoms, but I totally understand why she did, and I'm not ruling it out. For one, my pains typically start and stay in the same place (several key points throughout my body, but always the same spots). In my eyes, the diagnosis was divergence insufficiency, and I was told it was neurological, there's no physical reason they could find. Even had an MRI, so not even sure what caused it.
Another reason I don't suspect Fibro is that I get positive ANA high values (1:640 back in 2013 when this started, 1:80 back in 2020 but it was well after my episode ended, and 1:320 today). I know ANA is not always accurate, but it does go up for me when I'm going through an episode. My rhemy from 2013 thought I had lupus, because my back felt like it was on fire when I was walk out into the sunlight (with a long sleeve shirt on), among my many other symptoms and ANA positivity. But he wouldn't diagnose me with it formally. My most recent symptoms are so much more aligned with MS than Lupus. The only other odd bloodtest result is my iron supplies being nearly out of range (1 point from minimum). I just bought the most extensive liver and gallbladder tests I could find, and all was in range. But I will still discuss with my gastro. My CRP value was actually 0.6, which made me happy, because I was really concered these pains were cardiovascular, due to them throbbing with my heart rate and being in my chest, neck, and head. Score 1 win, I'll take it.
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3 Reactions@supernat10
My gastro appointment with the surgeon was good. I really liked her. We are going to hold off of the removal of my gallbladder for now and will check in with her in 6 months. She agreed with me that my neurological issues should be prioritized higher, especially to check/rule out MS and/or CIDP. I saw my PCP/primary doctor today and she is adding Gabapentin to my Rx list to help with nerve pain. She also want me to take my full dose of bupropion for depression (pretty significant and debilitating at this point compared to my “normal”…feel I am only functioning at 10%-20%). I have never been on it before and she said she would start me on the lowest dosage and I would take it at night since it can make you sleepy. She also wants me to see a sleep specialist again because I can’t breathe well using my CPAP for sleep apnea. I had no problems with it for 2 years and now I am having a hard time taking in deep breaths while awake or sleeping and can’t sing at church like I used to. I gasp for air now when I put the CPAP on so need to take it off and not sleep with it. My thoracic MRI came back normal which makes me happy (no stenosis/spinal cord compression or MS lesions noted). I see my new neurologist at the end of April (will try to get in earlier on a cancellation) and will ask for EMG, nerve conduction testing, MRI of brain, bloodwork for MS, spinal tap for CIDP, etc. if they agree it would help me get diagnosed with what is at the source/cause of my symptoms.
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2 ReactionsIt's been a while since I posted, so thought I would follow up as I'm in a new kind of flare. After my original post here, things died down a bit, but then a couple months back, I began to have a tense feeling in my neck that moved to my lower jaw area. Had a carotid scan that was normal. It turned into a lump feeling in my throat that lasted a couple of weeks. Followed by tingling/burning tongue sensation that lasted months. That all finally dissipated, and I thought I would get some relief. And it lasted a week or so. The only additional thing I noticed that did not dissipate is a popping in my neck when I turn my head to the right. I hear it throughout the day, and it wakes me up in the night when I turn over.
I woke up yesterday with the same but increased neck tenseness I had weeks ago, but this time it was up into my cheek, and my ear had a fullness, like the beginning of a sinus infection, but with no other symptoms, just ear pressure. That was all day, and loud noises were annoying. I slept well nonetheless (with a noisy fan on), and woke up this morning with a stronger tenseness in my neck/face/ear, and lost maybe 20 to 30% of my hearing it felt like. After a couple of hours sitting at my desk trying to function, it all went away, and was replaced with loud ringing. I can hear 100%, but just loud pulsatile ringing in that ear. Neck/face tensness is gone too. At this time, I also got a pain in my lower back which has been noticeably there since then. I am very dizzy since then, and my double vision feels slightly worse (but that could be in my head).
Needless to say, I'm calling to setup yet another appointment so they can tell me there's nothing to see here. But going to try anyway... How on earth can all of this be so inter-related, it's baffling.
With the way this stuff behaves (pain for a couple days followed by an abrupt change and often dizziness), it makes me think it's blood related, but one of my doctors said it's highly unlikely I would still be here after all these years if I had clots floating around. My bloodwork has always been normal in this respect as well as CT/MRIs of my brain, but it still crosses my mind.
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1 Reactionsupernat10, Praying for you right now.
Have you been to an ENT doctor? I wonder if you have fluid in your ear and possibly have developed tinnitus.
Please keep me posted. I care.
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2 ReactionsPrayers are very appreciated! I have been, several times. They looked at a brain MRI and said it was normal. Well, normal for me. I have 3 lesions on my brain that have been there since my first scan in 2018 but haven't grown, and I'm told I've probably had them since I was a teen and they are in a dormant part of my brain.
I'm hoping this is just some kind of inner ear fluid issue, seems odd that it would affect my neck and face too though. I have so many issues that I can't tell normal from abnormal anymore. I did have a similar ear fullness a few weeks back and thought I was getting sick, but ended up going away a couple days in like this, but no dizziness or ringing then.
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1 Reaction@ supernat10
Are you sure it is your neck popping and not your jaw? Move your lower jaw side to side .. does it pop or make maybe some sort of noise? You might have TMJ|TMD or maybe bumped your jaw or head in some way to injure it. A dentist usually handles that and hard to find one that deals with TMJ other than supply with a night guard and adjustments to teeth. The lump in your throat was most likely from swelling. TMJ can cause ear, sinus, throat and neck swelling and pain. … some people have headaches and arm pain. It can take a long time .. as in months … for the jaw and neck muscles to heal once the jaw retains its position. Exercises for the jaw and neck can help and nsaids if you can tolerate them. A steroid can help with swelling along with moist heat. I'm not saying TMJ is what you have .. just a possibility.
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3 ReactionsI stumbled across your post by accident, and have some input you are probably not going to like to hear. Find a way to get off the Nexium! Please google 'is it safe to take Nexium indefinitely', and any related searches. I cannot take any of those acid blockers. A doctor talked me into trying one for two weeks, and when I tried to get off I was in considerable pain - but I pushed through it. I am sure it is probably much worse to get off it after you have been on long term, but maybe there is a doctor out there who can by help you get off it. I now take l-glutamine ( I have been using Pure Encapsulations brand- I don't think all brands are equal) whenever my stomach acts up, and something called DGL Plus also by Pure Encapsulations. Plain DGL (deglycyrrhizinated licorice) is also very good, as long as you find sugar free (Nature's Way makes a decent one) DGL can effect blood pressure (upwards) which is not an issue for me since mine is low
I originally had a full blown ulcer, which is why I started. Gastro doctor told me I had cured my ulcer with using the stuff I have mentioned, but I still have to be very careful about what I eat, and suspect I have brought it back a few times by eating thing I shouldn't, so I am not 'cured' by any stretch of the imagination. Used to be able to eat anything -- Have not been able to figure out wht that changed.
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