Does anyone know what I have?

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Hey guys,
after 3 years of living with motility disorder, i have finally found out the name of what i had (meaning i lived three years without knowing what kind of illness i had, which was quite scary). but you guys seem to know the different parts of motility disorder and i was wondering if you guys knew what kind i had. well here are my symptoms:

I start gagging incessantly when:
- in the morning when i talk or brush my teeth. i also can barely eat anything otherwise i start gagging. my tolerance for any foods is nothing compared to the average tolerance, and this is added on to the previously mentioned disrupted appetite.
- my anxiety seems to be hypersensitive. if i'm meeting up with a friend i haven't seen in a while, i gag on my way there while walking in the streets to his/her place. this way it's pretty impossible to make presentations, have interviews for jobs, and anything that requires appointments.
- besides the mornings, my tolerance for foods has really decreased generally and i feel the need to gag when i eat up to 50% of what i consider being full. this way i eat extremely slow otherwise i will gag or throw up.
- i can't eat/drink anything sweet, anything with soy sauce or else a minute afterwards the gag reflex comes about.
- i can't do any physical activity that requires me to breathe heavily. this means i can't run, and i don't mean 100 meters or something that far, i'm talking about maybe 15 steps+.

i'm 19 and have been living the past 3 years of my life unable to eat sweets, run, eat, nor perform/present normally. it would be really helpful if anyone knew any diagnosis of what i have, treatments, or special doctors i could go to. thanks for listening guys.

9 replies

Edmund302 ,
Sounds like you found us just in time. It certainly sounds like you have a motility problem--not sure whether it is gastroparesis or not but I actually had a GI doc question me about gagging on the smell of foods etc today. If you don't already, you should probably get connected with Gastrointerelogist who can help with the gagging problem. I just got out of the hospital again--two week stay for severe dehydration due to not having the J tube in. They will be putting it back in at some point. But I am also having severe cramping for which there started me on Bentyl. So far, so good. I still required Dilaudid in the hospital but the Bentyl eased things up a bit. I also got a letter from Medicare that they are still gathering information from CDPHP re the gastric pacer surgery--it wasn't an out right denial so I took that as a positive sign. My doctors are still telling me short of having a feeding tube in for the rest of my life, the surgery is my best option. My Dr has referred me to a Dr David Lacy in NH-anyone ever heard of him> good? bad? otherwise? I am starting from scratch again since my surgeon will be in Iraq until February. Any thoughts would be greatly appreciated--and good luck to you Edmunds302.

I actually scheduled an appointment with Dr. Lacey (it's not until July) back in February or March when I was doing much worse than I am now with GP and my doctors didn't know what else to do for me. Now, I am doing much better, although I'm still struggling, and my GI doctor has been very helpful (and the domperidone finally starting working!). I'm not sure now if I need to keep the appointment, or if I should consider seeing him in the future if things get worse again (although, then I won't want to wait another 6 months or more for an appointment!). Either way, if you see him, I would love to know what you think and if he is able to help you at all. He was the only motility specialist I was able to find in this area (I live in Massachusetts and even Mass General and the other Boston hospitals didn't have motility specialists at his level, from the info. I found).

Edmund302- I'm so sorry for the difficulties you are facing right now. Have you seen a GI doctor, or a motility specialist yet? What area do you live in? Have they given you any type of GI diagnosis at all? I really hope you get some answers, and some relief, soon. Stay in touch with this site- it can be very helpful.

Kate

Did you try St Elizabeth's or Deaconness as I am from Boston and now live in Arizona have thought of going back as I was told they both had motility specialists anither thought is Lahey Clinic in Burlington I have heard they do and definitely the nearest Mayo Clinic to you in Ma. they are the only one in the state of Arizona that do motility and I know there is a Mayo Clinic in Ma. The Lahey is some how connected to them good luck.Mass General does upper motility but not lower or they did as they treated my son who is now 12.Best of Luck Jeannine

Hi. It sounds an awful lot like gastroparesis. Ask your doctor about that and see if they will order a Gastric Emptying Test. That will tell them a lot. I am sorry you are dealing with so much, but often diet for gp is so varied person to person. You can look at g-pact.org for a great deal of information and the MayoClinic web site is good too. That may help you narrow down some symptoms and give you ideas for questions to your doctor.

Oh, stress does cause gp flare ups and sometimes may effect the amount of nausea and vomiting you have. Perhaps it is related to that stress. If you are not emptying your stomach well, then the acids in the stomach just sit like a pool. I have been dealing with that for sometime now. No fun.

thanks a lot everyone. msmac have you been treated yet? are there any treatments that require just simple medications? thanks for the website it really helps

Yes. There are a variety of meds they can try if you actually have gp. It is important to be on a motility drug such as reglan or domperidone (most of us get the domperidone out of canada, I can give you the info), also many people are on priolsec or nexium over the counter, a nausea med such as phenergran or some use elaval (sp), also you can use quesy pops (lollipop for nausea alot of pregnant moms use), most use miralax to help keep bowels moving. I take domperidone, amitiza (prescript), phenergran and miralax. There are many combinations of the meds. Also, if you have severe nausea and vomiting, you may qualify for a pacer in your stomach. GP has no cure, they can only treat symptoms. When the Vagus nerve dies, you can't revive it. Bloating is also a big problem and liquid beano and gas x are used the most. Feel free to email me here or personally any time.
I hope when you are tested they find you do not have gp.

I had a pyloroplasty with j-tube placement in April. The hope is that late this year I will be able to move the bile and food out by gravity. I already see a difference in my nausea. Have a good afternoon.

Jeannine- Thanks for the suggestions. I have researched specialists in the area, and saw one motility specialist at MGH (which wasn't very helpful). It looks like Dartmouth-Hitchcock Medical Center in NH (where Dr. Lacy is) is one of the best options in the area as far as receiving comprehensive care for GI motility. Unfortunately, there is no Mayo Clinic in Massachusetts, otherwise that would probably be my first choice (I've heard such good things!). However, if they are associated with Lahey, then I may consider that option as well. I have had mixed experiences with Lahey clinic in general, but it's worth looking into.

Thanks again for your response. Hope you are doing well.

Kate

Dartmouth-Hitchcock in NH has a great motility problem my now 12 year old had a really bad upper motility problem.He was about 9 months to a year when he spend some time there.He had reflex so bad as an infant on prilosec cisapride we tried everything due to the fact that ha had aspirated so much his airway would shut to defend itself as soon as anything touched the back of his throat therefore he couldn't eat any solid food remarkably they held him when MGH couldn't help or Boston Children's best of luck Jeannine

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