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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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Hi supernat10,
You have been through so much, and we are all hoping for some spot-on diagnostics for you. Finding the right team of doctors who understand what you are experiencing is vital in knowing 'how to go forward'.
You have received some great advice. As Becky has stated, I would add encouragement for you to get a thorough examination by an eye specialist. Double vision, which can be on and off, can be an important sign of autoimmune disorders. Although it sounds scary, it might be a good direction to get Muscular Sclerosis taken off the table.
Please let us know how you are proceeding. It is a battle to get to the correct 'label'; but it is so necessary to begin the treatment to assist you in living your best life.
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3 ReactionsI use a drug called Sucralfate for my stomach pain. My GI described it like a band-aid for the stomach and I agree with him. I also get small bowel bacterial overgrowth (SIBO) and that can cause similar symptoms to GERD or gastritis. If your esophagus and stomach look normal on endo, I would try to taper off antacids. I think I recently read about a connection with dementia in later life. Have you ever had your blood bile acid tested? I'm very low and have no alp isoenzymes in my intestines either.
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2 ReactionsOh yeah, my GI prescribed those as well. I've tried using them, but didn't seem to make any difference in the pain I experienced. I think you're right about dimentia, I've heard that as well. I certainly don't want to be on these. I had a GI about 5 years back yell at me to stop trying to get off of them after I asked about it, literally yelled and told me there were no long term effects and the alternative was cancer. If I could go back to my 20s, I would never have started them, and just changed my diet like I should have to begin with. Haven't had my blood bile acid tested, sounds like something I could give a try. Thanks!
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1 ReactionThank you, it means a lot. I feel like I've been struggling to find a proper diagnosis for so long now, it's debilitating. I am seeing a neuro eye doctor actually. He did several balance tests, and I failed those, so have to go back in for more balance testing next month. He didn't really have a reason nailed down for the double vision yet. I have also suspected MS. My laundry list is so long I didn't include it in the original post, but I've had or have: double vision, brain fog, fatigue, chronic cough, trouble with breathing deep, random pains above my waist all over, pins and needles in both hands, muscle spasms/twitches random places, vertigo (only when I lay back), pulsatile tinitus, and weak muscles when I stand up after sitting a while (feel like I'll fall over sometimes although I never have). I also forget a lot and can't think of words often. I went to Harbor Freight with my son yesterday, and we were inside the store not more than a few minutes, and I had to ask him where we were, because I couldn't remember the name. These don't all come at once, but have been present over the years when I go through these flare ups. I had a brain MRI a couple years back due to these, which was normal, but have never had a spine MRI. My neurologist didn't think it was MS, because I still have good control over my muscles. I'm also aware that many people suffer from MS limbo, and I wouldn't be surprised to find that's what I've been in. I'm hoping it's not that, but finding out it was would be a relief.
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3 ReactionsYes, I understand: even a diagnosis with something nasty comes with its own relief. .. finally the monster has a name. Then, treatment can commence!
All the best.
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2 Reactions@supernat10 Sounds like you’ve been trying everything possible and getting nowhere. Can you call GARD ( Genetic and Rare Disease organization):
https://rarediseases.info.nih.gov/ Or NORD (National Organization for Rare Diseases):
https://rarediseases.org
These 2 organizations are there to help persons with autoimmune diseases and, in many cases, help with finding doctors. If it means going out of network, ask them the best way to do that. I would suggest asking for a rheumatologist.
Does any of this sound doable to you? I hope you will do this. You really need some help.
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3 ReactionsI am so sorry that you are going through this. I too think that you should get in to see a rheumatologist. I have several autoimmune diseases and the rheumatologist I have now has it better under control. He did refer me to a few specialists, a pulmonologist, dermatologist, , etc. He's careful to get echocardiograms, a lot of blood work, gets rituxan treatments. I do such weird things. I never know what's going to turn up yet. Having this experience, I wonder if you might have some type of or types of autoimmune disease. I am 74 years old and my problems started when I was 36. At one time. I did not think I would still be alive. Hang in there.
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3 ReactionsWelcome. This is the best group always willing to share and to help each other as much as possible. My very first thought about half way through reading your experiences is…if I were you I would call Mayo Clinic and make an appointment ASAP! When things have gone on for this long and this painfully there needs to be a complete turn around!! That is what I think. Mayo in my mind for diagnosis cannot be beaten. And MD Anderson in Houston for Cancer treatment is where I would go if I ever need that. When I was 32 years old I had a Psychiatrist stop our counseling appointment to tell me that she was sure that a mole on my face was melanoma and she wanted to get me into a surgeon immediately! That was December 22. Now at 7:00 PM right before Christmas in my world you don’t reach doctors and she tried and he couldn’t do it right then but met my husband and myself at 9:00 AM the next morning. He took one look at it and he said I agree with the other doctor and I need to take it out right now and get it under a microscope. It scared me nearly to death I could hardly breathe. I said I need to make one call. I’m a very spiritual person and I called a spiritual friend. I asked her what do I do? “She said, go with the experts!” That statement has stood me well ever since. I say to you today. Go to the expert diagnosticians. Let them help you. Prayers all the way around. So happy that you are here. Please keep us posted as we really do care about what happens to you. We get it.
At 10:30 AM on Christmas Eve morning the phone rang and my husband answered it. It was the doctor saying that it was benign! My family had the best Christmas that we ever had and it had nothing to do with Santa Claus or gifts under a tree.🙏🙏🙏
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4 Reactions@supernat10 a lot of your problems sound like mine, and I have fibromyalgia, GERD due to a hiatal hernia and arthritis as well as Posterior Vitreous Detachment which causes those eye problems.
I agree with @becsbuddy’s suggestion to see a rheumatologist, a gastroenterologist, and an opthalmologist to check for Posterior Vitreous Detachment. Those flashing arcs you occasionally get could be due to silent migraines. I get them and my opthalmologist told me that’s what it is. He has also diagnosed my Posterior Vitreous Detachment which just needs to be monitored once a year.
Fibromyalgia is very difficult to diagnose because it can mimic so many other illnesses. It took many years and several specialists before I was finally diagnosed by a rheumatologist.
https://www.mayoclinic.org/diseases-conditions/fibromyalgia/symptoms-causes/syc-20354780
GERD can cause those chest pains you get. I get them too. Yes, drinking a little water each time they happen really helps. I always keep a bottle of water with me, even beside my bed for the occasional night time attacks.. What also helps is raising the top of your bed on bed risers under the two top legs or casters of your bed frame (bed risers come in sets of four but you need to use only two for the top of your bed. They are available on Amazon and any store selling bedding). That helps reduce the acid reflux - in addition to proper medication. Also, it helps to stop eating and drinking at least four hours before you go to bed.
https://www.mayoclinic.org/diseases-conditions/gerd/symptoms-causes/syc-20361940
A good opthalmologist should be able to diagnose Posterior Vitreous Detachment
https://my.clevelandclinic.org/health/diseases/14413-posterior-vitreous-detachment
Symptoms of a silent migraine
https://www.webmd.com/migraines-headaches/what-are-silent-migraines
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6 Reactions@supernat10,
I can relate with your experience and symptoms.
I am in the process now of getting a new neurologist to test me for MS and CIDP. I have had vision blurriness, brain fog, cough, trouble breathing deep/singing at church, chronic extreme fatigue, full body pain at different times, arm/hand/leg/feet pain/weakness/numbness and pins/needles, muscle spasms/twitches, dizziness and balance issues, tinnitus, memory issues (feel like I am getting dementia at 54 years old), difficulty speaking/finding words and swallowing at times, etc.
I had pressure and pain around my chest (MS hug?). I have gastritis and esophagitis and take omeprazole and recently had a HIDA scan which showed my gallbladder stopped functioning (need to have it removed because it causes pain near my liver/gallbladder which runs across my rib cage after eating). Have you had your liver/gallbladder checked? It could be tied to autonomic nerve dysfunction which can affect heart, lungs and digestion. Have you had a small fiber neuropathy punch biopsy done to see if that may be causing some of your problems?
Good luck!
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