Unknown illness

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.