2 years ago I was diagnosed with an esophageal dysmotility at the lower end of the esophagus where my esophagus meets my stomach. I was told it was GERD related. Two weeks ago I was diagnosed with severe gastroparesis. They are trying to figure out the cause. Is dysmotility in the GI tract a definite symptoms of an autonomic dyfunction? I am scared I have some major neurological problem that is causing this. I have carpal tunnel in both wrists but other than that I don't experience any other neuro symptoms. I was reading about amyloidosis causing neuropathy and I got so freaking out thinking I could have that.
Does anyone have any knowledge of what GI dysmotilities could be caused by an autonomic dysfunction, what types, and if they are considered life threatening conditions?
While digestive problems like Gastroparesis are common in Dysautonomia, they are diagnosed even more frequently outside of Dysautonomia. Are you experiencing any other autonomic symptoms? How is your blood pressure?
In many cases, Gastroparesis is idiopathic, meaning "of unknown cause". What has your doctor said? Did your doctor mention Dysautonomia? I hope you feel better soon!
And not really, my gastro doc hasn't said anything about dysautonomia, this is my own research. I am questioning why it started in my esophagus then now the stomach, almost like it's moving downward? Or maybe it's unrelated? The esophagus is due to GERD, the gastroparesis is idiopathic? I am going to Mayo in Rochester (live in Minny) on May 11th for further testing on the gastroparesis diagnosis.
As far as other neuro complaints, I don't really have anything unusual. Sometimes, I will feel a tad lightheaded if I get up too quickly but it's not that often at all and I find it has more to do with if I am hungry sometimes. Like if I haven't had much to eat it has happened before but otherwise, I really don't get that symptom regularly. My blood pressure seems ok, I've never been told otherwise and I've never gotten any weird readings either at the doctors office or when I'll play around and take it at Target or a grocery store that has a pharmacy and health area. I have carpal tunnel in both wrists is about the only neuro symptoms I have.
I have gastroparesis as part of my dysautonomia. In my case, the dysautonomia is all due to my autonomic nerves being destroyed. A tad lightheaded is how I started having trouble, but I progressed to full passing out long before I got to gastroparesis. Diagnosis of small fiber (autonomic) neuropathy is rather recent, because doctors have had trouble developing a slide stain for the skin nerve biopsy. Here's some good info on peripheral neuropathy: http://www.nlm.nih.gov/medlineplus/ency/article/000593.htm
If you're really concerned, though, ask your gastroenterologist to refer you to a neurologist. I'm sure there are a lot of causes of gastroparesis out there, and it's better to find out than worry about it.
If I can ask about your diagnosis... what is your prognosis? Is this a condition that you can treat and does it reduce your life expectancy or is it just something that is annoying that you deal with that isn't life threatening?
Also, how are you treating your gastroparesis? I am so scared at the thought of feeding tubes and all of that. I want to prevent this!
I'm still waiting for a prognosis; just got back from testing at Cleveland Clinic. A lot of small fiber neuropathy is caused by treatable or curable things like autoimmune disease, B12 deficiency, Lyme disease. Those have been ruled out for me, except Sjogren's (autoimmune) which I'm waiting for right now. The long term outcome depends a lot on the cause. If it's something like B12 deficiency, you just take supplements and life goes back to normal. Other cases are more complicated.
With the gastroparesis medications have not helped. I can't take Reglan because my other autonomic symptoms are so severe, and Reglan can sometimes cause dysautonomia. So far, I've done fairly well watching my diet. I cut out all fiber, including fruits and veggies for about two months, which gave my stomach a chance to calm down. Now I can have a little bit of fiber from grains (Quaker Oat Squares in my case) and fruit that's cooked and sent through the blender. V Fusion has become my new best friend, because I ate a lot of fruit and veggies before this. I was freaked out about feeding tubes too, but taking a couple months to eat turkey, white rice, and white bread really helped. It's a boring diet, but way better than feeding tubes.
Out of curiousity, what is your blood pressure normally?
I am in the process of getting a final diagnosis, so far just small fiber neuropathy. I, too, have gastroparesis and have been vomiting daily for almost a year now. Gastroparesis is definately a symptom of autonomic dysfunction. I had esophageus problems as well, 1st an ulcer than erosive esophagitus. They attributed these to GERD and am on proton pump inhibitor for it, that has worked well for me. I have tried reglan, compazine, zofor and domperidone with no success for the vomiting. I am seeing Dr. Fealey at the Mayo, although it is a 5 hour drive, I live in Northern MN. I am seeing him again the end of May. My local neurologist has said she will follow me with help from him via telephone, etc. as she is not an autonomic specialist. I highly recommend Dr. Fealey, although the other docs in the autonomic division are great as well. While you are there, request an appt with a dietician, I highly recommend this. They are so helpful with diet suggestions. Diet adjustments have been the biggest help for me. As far as gastric tubes go, I think you would be blending your food 1st. Have you tried this yet?
AireScottie, thanks for the info. I hope they find out that your cause is easily eradicated. :-) I am basically eating chicken breast, bananas, and broth right now for food intake, it is helping some, but every morning I am SO nauseaous. The bloating ***** so much and that throws off my breathing which makes the nausea even worse. It's a terrible vicious cycle. My blood pressure, I actually went to the doctor yesterday, it was 110/70 I think?
shannonkim, thanks for the post. :-) Yeah, my fear of feeding tubes, I know, is very "out there" right now because the reality is statistically only 5-15% of people with gastroparesis need them ever, which means 85-95% never do. Those are good odds! It's still so scary, man. I hate this. Especially not knowing why I have this happening. I am told by my internist my thyroid is fine, I do not have diabetes, and overall my bloodwork looks good. She did run an ANA to check for a connective tissue route but she didn't do much since Mayo will be dissecting everything come May 11th.
May 11 is coming up soon. Thank goodness for that! Let us know how it goes.
I wondered about your BP because a lot of people with dysautonomia seem to have really low normal BP for years before they start passing out. 110/70 is pretty normal though.
A dietician is an excellent idea, although some have no idea how to handle gastroparesis. What's the latest you eat before going to bed? I found that eating a light meal for dinner and not eating past 7 really helped my morning nausea, because there wasn't still something in my stomach. Also, I have had to learn to belch like a beer chugging guy. I was always very polite about burping, but the relief is just too much to pass up now :) I've also found that leaning forward helps push the bloating out.
Shannonkim - glad to hear somone else has small fiber neuropathy, although not glad you have it!
Thanks. I will certainly let you know how it goes. Interesting about the blood pressure... yeah I have never been told I've ran low blood pressure ever. I don't know if that is significant or not? Yes, I hope Mayo hooks me up with a dietician. I try not to eat anything past 7/8ish either. I totally agree about it helping morning nausea. But last night I was an idiot and had some food around 10 pm, by midnight I was nauseated, felt like I was going to throw up (didn't) but my stomach didn't calm down enough for me to get to sleep until 2 am. Then I woke up not feeling too great either. I can't stand this. Oh yes, belching RELIEVES a lot of the pressure and nausea I find as well. Big time. Whenever I get bad nausea attacks I drink something like ginger ale because the ginger is known for settling the stomach but also because it can make me burp which relieves some of the pressure and nausea.
What are you symptoms of gastroparesis at the moment if I can ask? Are you just controlling it with diet? Do you follow up with a GI doc? Have you tried anything alternatively to help it like herbs of any kind? I have heard acunpuncture is good for gastroparesis. I just want a handle on the gastroparesis somehow and I want answers as far as why my stomach would suddenly stop functioning correctly being a non diabetic with no other conditions known at the moment that could cause this. It's so frustrating.
Right now I'm just (kind of) controlling it with diet and Prevacid for a little acid reflux. I do have a great GI, but we agreed that it makes more sense to wait until more of my small fiber neuropathy testing is done before trying anything else with the stomach. We're both hoping the neurologist can find an underlying treatable cause for the neuropathy. I'm also non-diabetic with no history of diabetes in the family. Before my dysautonomia started (with the passing out during exercise) I was disgustingly healthy. I mean, I was a poster child for healthy eating, an active lifestyle, and good mental health. So far, the cause is still a mystery. Right now, my stomach is just bloated and kind of achy. Before my GI testing and diagnosis, I had really sharp stomach pains right above my waist, vomiting sometimes, and horrible smelling bowel movements (because the food was sitting and decaying in my system). I had started not eating much because I felt so full all the time. Now, if I "accidentally" eat a somewhat fatty food, the stomach pains come right back. Sometimes I get diarrhea for a day. I don't know about acupuncture. I'd love to try it, but it's not covered by insurance, and I have no money. It's good that your doctor ran an ANA test, but there are a ton more tests for autoimmune disorders. My last panel was 21 vials of blood. The docs at Mayo should know what they're doing, though. It's good that Shannonkim lives in the same state as you. At least you can check with her if you aren't getting anywhere.
For sure. Yeah, my internist said because I already had some bloodwork done 3 months ago she wouldn't repeat what was done especially since she knew Mayo would repeat everything anyway, and more. She ran the ANA as a baseline she said. The weird thing about this is when I got my dysmotility in the esophagus in 2007 I actually saw a rheumatologist (for some sports injuries due to my knees and they were determining rheumatic disease versus more of an orthopedic cause only) and when I mentioned to him I had an esophageal dysmotility he said, "Ok I am checking you for connective tissue diseases then just to make sure" so he checked me for lupus, scleroderma, etc and all tests were fine. That was two years ago, though, but I was nauseous back then and I assume I had the gastroparesis along with the esophagus dysmotility too but they didn't do the emptying study until recently to confirm. So back then they couldn't find a reason rheumatically as well as thyroid and diabetes being ruled out. That's why my hunch is they are going to find an autonomic neuropathy of some kind or they'll say idiopathic. Just my gut feeling. We'll see. Nevertheless, this condition is horrible. I can't stand the feeling of nausea. Give my anything else but this! Also the fact that I cannot eat the foods I've always loved is so difficult as well. I really want to know if gastroparesis is progressive. That's the thing I am wondering the most... how do most people do? I keep reading that most people never need feeding tubes, they just deal with the annoying symptoms but they are not having to go with drastic measures and only a small portion do, yet I see so many people so sick with this ON those very feeding tubes as well. It's hard to know the facts.
I hear you about acupuncture. I am looking into this after Mayo regardless of my diagnosis and I cannot believe what they are charging. Like 150-200 bucks for the first visit then 70 bucks for follow ups. Ok that's a lot of money! I know I could find somewhere maybe slightly cheaper but these are contacts I have gotten about the good ones. Man.
I find it interesting how yours started very acutely. Maybe you had a weird virus going on that attacked your vag nerve and this will all work itself out in time, both the gastroparesis and the neuropathy?
Yeah, I don't know why it started out of the blue. I do have a genetic connective tissue disorder called Ehlers-Danlos which seems to have a strong association with dysautonomia. The weird part is, everyone in my family has it, and no one has had trouble like this. I hope this might resolve, but it's been getting steadily worse for 7.5 years, and my nerve biopsy showed I have less than 5% of my nerves left. Unless the doctors find a treatable cause, it's probably not likely that it will go away. On the other hand, stranger things have happened.
Hope you're not too anxious waiting for the 11th!
I really hope you find answers and at least it is a controllable condition. :-)
Thanks. I just got my ANA result back from my internist via email: Negative. I asked if if this probably ruled out a lupus or scleroderma diagnosis as a cause and she said yes. It's weird because at this point I don't even know what I am waiting to here... do I want to be told it's idiopathic? Do I want a cause that maybe they could treat and even cure? It's so confusing which is why I've decided to just let fate give me the answer since my head hurts trying to come up with answers on my own. Lol.
Yep. That's about how I feel right now. On the one hand, I'm glad I don't have to listen to any more doctors tell me I need a tranquilizer, have an anxiety disorder, or must be depressed, or put up with nurses trying to cram antidepressants down my throat. There's nothing wrong with these treatments in the right circumstances, but they sure don't regrow nerves. And it's really annoying having someone who doesn't know you try to bully you into believing you have a mood disorder, when you, your coworkers, your friends, and your family all agree that you're very far from it. On the other hand, what the heck is the problem? My neurologist clearly has experience with this and is willing to discuss it with me, so I too am biding my time until all the test results are in.
You're so right on about how it feels good to at least know the medical profession cannot label this as mental. Absolutely. I have what's called Selective IgA deficiency and it just basically means I get more colds than the average person (although sometimes not) and I am prone to more GI issues as a result since IgA is mostly in your gut and if you lack it, it could cause some problems. My niece has it too, it's genetic. Anyway, apparently I have had this condition since birth and as a little girl, 18 months old, I suffered with chronic diarrhea so my parents took me in for testing. Of course did the doctor think to check my IgA? Nope, I didn't find out I was IgA deficient until I was 30 years old! But what did the doctor come up with when I was only 18 months old? Oh I was just hyper and emotional and reacted to things moreso than the average toddler. He basically labeled me neurotic and I was that young! Unreal! My parents never accepted this diagnosis but yes, that's what this supposed excellent gastroenterologist called me since he couldn't find the real problem, a problem that is VERY easy to find and even my immunologist now absolutely rolls his eyes thinking about how he missed that diagnosis given my symptoms, let alone labeling me at 18 months as "emotional". Unreal.
Hey there, wondering about your appt at Mayo on May 11th, what did you find out? Did you just see the Gastro people, or someone in Autonomic section? I saw Dr. Stephanie Hanson, a Gastro Motility expert.
I also have gastroparesis which fluctuates with rapid gastric emptying, IBS, hiatal hernia, dysfunctional gallbladder ( which also causes upper gastric pain) a lesion in my brain and recently numbness in my right arm and tennis elbow. I have always had low bp and pre-syncope (light headedness and dizziness upon standing) and syncope (blacking out upon standing). My doctor told me just today that all of these things can be caused by Mitral Valve Prolapse Syndrome. It can cause nerve problems, dysautonomia (autonomic neuropathy), gastric problems, depression, anxiety, panic attacks....all kinds of stuff. They are going to do an echocardiogram to check for it. This may help some of you. Alot of you seem to have some of these symptoms. Hope this helps. I have been going crazy with all this testing. I also went to the mayo clinic in MN...no answers just more symptoms. Im hoping this may bring an actual answer. No cure, just a different cocktail of meds to treat the symptoms. But sometimes just knowing helps.
Keep up the fight....dont ever stop researching things on your own. It has helped me alot. Even if to just understand how the body works better.
I recently started to have problems with my esophagus. I eat food and it doesn´t transport food to the stomach, so the food stays in the esophagus. I had an endoscopy and there is nothing wrong with the structure of the esophagus. I think it something functional. What could be causing this? nerve damage? autonomic dysfunction? is this neurological?. I am losing weight, because I don´t digest food properly
Ha ha ha! Me too polite betchling and passing gas went out the window years ago for me! I actually say pardon or excuse me AND Thank god!!!
Nice to see I'm not the only person in the world with this condition.
Thanks everyone for the info!
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