I have been dx with gastroparesis, Peripheral neuropathy, HTN, sleep apnea & GERD , I'm not diabetic, my Nero is thinking I have MS, he is going to have me get a spinal MRI & a LP, I am on Neurontin 800mg 2 2x a day. Does anyone on this board suffer with this problem
My stomach, it always stays so bloated, I'm so miserable I never want to eat and when I do it comes back up, not like throwing up but small amounts of undigested food up in my throat and it is very sour too, my throat burns for awhile afterwords , I don't even eat that much, the doctors did a test something Nuclear, where I ate an egg sandwich with Nuculear meds in it and put me under an x-ray machine to see how long it took my stomach to digest, well it was too long, so they are saying I have gastroparesis (meaning I have nerve damage) does anyone have this
I have gastro also believe me it is not fun did they put u on any meds?
I currently take erythromyicin and reglan which i learned is better in liquid form the last bout i had took months to get better i had to where a patch for nasuea all the time for many monts before it started getting better i got over it for awhile by watching what i ate and did stress agitates it also then i got pregnant and that flared it back up again I am just reaching the 2nd trimester it is still here I believe I will battle it through the whole process as that is somethign that triggers it.
Going out to eat is miserable when I think i am feeling good i go to eat and i start getting sick and my favorite foods make me want to throw up it stinks I hve lost 10lbs in the first trimester and still loosing this is worse than the first bout. Drs adv that I would probably always have ot deal with it even after I think I have it under control
What was your score on the gastric emptying scan? Mine was 89 minutes for half of the sandwich.. which is borderline... but I know I have slow emptying because I can taste a meal with a belch about 4-5 hours after eating. I also have developed GERD because of it and now just recently acute back pain and strange sensations in my back and in my extremeties. Gastroparesis isn't always caused by nerve damage... most of the time it's that or diabetes... but I read somewhere that 40% of it is idiopathic.. meaning no known pathology for it. I refuse to take reglan because it's supposed to have some nasty side effects and I hate taking new meds anyway. I was given a trial of zelnorm which I'll get around to one of these days. Certain studies have shown that it helps with gastric emptying with some patients. Food wise, I stick to soft, bland stuff... chew REALLY well, and drink about 1 to 2 Ensure Plus's a day. A good rule of thumb I use is that anything that is hard to chew or doesn't dissolve well in your mouth (unfortunately even chicken) is something to avoid. I've found eggs (though I use egg beaters for healthier food), fish (great for you anyway), soft breads, yogurt, fruit, and some others tend to agree with me. Basically, your stomach isn't moving and grinding food the way it should. I also found that when I can, exercise after eating, even if just walking, helps with the movement of food. What symptoms of your PN did you have? I've had tremors now for awhile, muscle twitching, and strange sensations in my arms and legs... a little numbness, but nothing crazy. My neuro wants to do an EMG, though I don't know if it will show anything. Is that how they diagnosed your PN? Anyway, good luck. I hope the tests come out ok. I just had a Chest CT today to look for what's causing my back and chest pain, no answers yet. I think something is going on with my spine though and really want to push for a MRI. The *******s at Anthem though are so reluctant to give them.
Btw.. what is a LP?
Last edited by moesciphish; 06-24-2006 at 08:10 PM.
I have to correct this poster here - I've had GP for 2 1/2 years now and I've researched it thoroughly. GP is ALWAYS because of damage to the vagus nerve. In diabetes, the vagus nerve has been damaged by the yo-yoing of high/low insulin levels. Idiopathic (no known cause) simply means that the REASON for the nerve damage is unknown - NOT, as moesciphish infers, that it is caused by an unknown reason other than nerve damage.
This causes the stomach to go into a type of paralysis, it fails to expand when it receives the food (leading to early satiety - feeling of fullness after just a few mouthfuls) and prevents the churning of food to break it down and then the contraction of the stomach to propel it into the duodenum. Symptoms include but are not limited to early sateity, bloating, nausea, vomiting, loss of weight and pain, which can be severe.
Because the vagus nerve goes throughout the intestinal tract it often affects the bowel as well, so chronic constipation is also often a symptom.
The rule of thumb for diet is avoid fatty foods, fibrous foods, anything with a skin or seeds. Broccoli and oranges should be avoided because there are parts of that that are totally undigestible even with a healthy stomach. You may find that a more liquid diet suits you better but whatever it is try and pack it with proteins and carbs and if you need to supplement it with Ensure or similar do so
It IS very difficult to manage and informed Dr's, will say that they can only manage it symptomatically, not treat it, as it is effectively incurable. Patients really have to experiment with diet AND medication to find what suits them the best. Some patients have it much worse than others. I have been known to bring up indigested food over 24 hours old and have spent 80% of the last 2 1/2 years in hospital because of it.
The main meds are erythromycin (an antibiotic), metoclopromide and domperidone (both anti-emetics to help with nausea and vomiting) which encourage the motility (movement ) of the stomach and bowel. Domp has less side effects that metoclopromide. I've heard Zelnorm is being prescribed especially in the US but I've not tried it .. also if you suffer from high levels of stomach acid PPI's (proton pump inhibitors) are prescribed to reduce the acid and help prevent ulcers. It can wax and wane (come and go) so that you have sometimes a couple of months where the symptoms seem to be less and /or are more easily tolerated.
moesciphish, this could be caused by metoclopromide if you're on it .. many GP sufferers have experienced muscle twitching etc but as yet none of their doctors can give a definitive answer for the cause.
There is a support group on line - its a yahoo group - unfortunately I can't get on it at the moment as its not connecting to the server - not sure if it's my computer or a www problem - which is very good as there are loads of people on it that can identify with your symptoms.
Hope this helps explain the illness a bit more ...
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Last edited by moderator4; 06-25-2006 at 06:05 AM.
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Sorry for the mis-information, I'm not an expert on it and am relatively new to it. Though from what I read, it sounded like they were saying the idiopathic causes were not related to nerve damage. But it makes sense. I also have unexplained sinus arrhythmia, mainly tachy. I swear up and down that something has damaged a nerve and is causing all my problems. I guess I get frustrated because I'm 28 y/o and non-diabetic. So then shouldn't there be a clear explaination of why my vagus nerve is damaged and causing this, and shouldn't my GI realize this??? I did read anxiety can cause ANS dysfunction, which I'm hoping is my case. Another thing I notice is that when my stomach is empty, like in the morning when I wake up, that's when it starts to rumble and move. If I had full gastroparesis, would I still get this?
BTW... I have never had any nausea with my slow emptying... would this be any significance? Again, the day of the test I was in very bad anxiety and have been for awhile. With just 89 minutes, could it all be anxiety or ANS disruption rather than nerve damage? Nerve damage scares me.
Hi, the whole thing about GP is that nearly half the cases are idiopathic - there really isn't any known reason for why the vagus nerve has become damaged. The other reasons are diabetes and post surgical (usually after previous gastric/abdo surgery).
Believe me, even when you have GP your stomach can still rumble and gurgle! We can even really crave for and eat! food we KNOW is going to make us ill !
As I think I said, GP affects people in many different degrees of severity and your story is not unusual. You don't have to show all the symptoms in order to be diagnosed with GP. Just the emptying rate is sufficient. It may be of interest for you to know that even that test can vary from day to day and on one day may show up a real delay in emptying and another day not show any sign at all!
These are all reasons why it's so difficult to manage with any certainty.
As for the nerve damage beng scary. Be reassured that it's not a disease that has any morbidity rate attached to it. It's a chronic long term illness but not considered a life threatening one.
The whole thing about any idiopathic illness is that we need an answer or justification for what is wrong with us - somehow it makes it easier if understand why we're ill.
I've found the link for the GP support group on yahoo.
I'm sure if you post your queries on there you will find a load of advice, support and understanding from people all over the world with symptoms just like yours.
Good luck !
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Last edited by moderator4; 06-25-2006 at 09:54 AM.
I too was just diagnosed with gastroparesis. I had my gall bladder removed in early December and that is when all the problems started. From everything I have researched I believe there was damage to my vagus nerve during the surgery - is there any way to tell if this is the case? Another gal had the same surgeon remover her GB one week later and has the same problem now. I am not diabetic so that is not the cause. When I had the gastri emptying test my results came back that only 2% of what I eat emptys. I have been trying to get into Mayo Clinic but they say 5-6 months. I am basically living on liquids as even the diets the dr's gave me make me sick. And I never know if i can leave the house as I'm usually constipated and horribly bloated (look 9 months pregnant!!) but when I can finally go to the bathroom it hits hard and long. I guess I really want to know if the surgery caused this and how to prove it. Any suggestions from anyone?
I too have GP I was dx with it before my gallbladder was removed I had large intestine surgery they removed the whole thing due to it shutting down and was casuing bad problems. about a year later I started with the severe nasuea was in the hospital for about a week with numerous test he was afraid that it was GP but was trying to rule it out with possible other probems after having the nuclear test 2/3 food left after 120 minutes he said GP it took a good many months to get it under control I could not function with out the patch for the nasuea finally i was able to remove it. Up until about 3 months ago i was doing pretty well then i got Prego well that flared it back up again and I have lost more weight this time than time before as I am unable to use the patch due to risk factor all I can take that somewhat hleps and is very exepnsive is Zofran.
I wish you luck there isnt much help on the net about GP i will check out the group someon suggested. I take reglan and erythroymicin i tried the zelnorm but sine i have no large intestine i think that is why it didnt work for me as it made me have bad D.
wieght lose and dehydration is my biggest problems well and of course the nasuea.
I've had symptoms of GP most of my life but didn't know back then what was wrong with me. I'd be in a MacDonalds, eat half the food, then had to rush to the washroom to vomit. After my endoscopy 2 years ago by a gastroenterologist, he said I probably have GP. Its worst in the morning and early day, can't keep anything down. But late evening or night, a lot of the time I can eat to my hearts content. Strange huh.
Another thing, I always have a normal bowel movement in the morning. Only get constipated if I'm on medication or other rare occassions. My family doc thinks I have IBS but how would that explain the nausea and vomitting from eating. I do know one thing for sure, my throat is getting worst from all the vomitting and acid reflux. It kills me to give up colas, chocolate, stuff like oranges, pizza, fried and spicy foods. This past couple months, losing weight like crazy, very worried. Had to go out and buy a powder meal replacement formula. Hope I can keep it down.
Anyone have a meal list or other suggestions to share, welcome.
I'm currently on domperidone again. It only works for me about 1/3 of the time.