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Posts (136)

Tue, Feb 4 10:01am · Gastroparesis in Digestive Health

Greetings Aishia,

Thank you for your imput on your personal experience with Gastroparesis..I empathize with your story too. I can say that it is an ongoing battle that doesn't have any ending for sure!. In answer to your ? about the stomach emptying test… you only need it one time to determine how long it takes your nerves in your stomach to digest, I was told by my Gastroenterologist. I originally had it done in 2007. If anything, the symptoms will get worse over time as we get older. I have found that diet is the best option. I am not taking Zofran or any of the other drugs I had taken in the past for nausea either. I have found that drinking tea made from natural things like Ginger root and Basil leaves will help with symptoms. I grow my own Basil too and then dry it to have it on hand. Excersize too helps as was mentioned by another member prior. Some times I experiment with eating a food that I was told that I shouldn't eat and it will be okay. I think it depends on other things going on as to if it will make me sick or not or be tolerated. That's so weird I think but thought I would pass that on as it has happened. Like raw lettuce, Romain, I can tolerate once in a while. I do a lot of smoothies and have found that using a Super Food of dehydrated veggies, fruits, probiotics and vitamins mixed with coconut or almond milk, ice and banana or strawberries or powdered peanut butter in the blender is very good!. I buy it at Walmart in the vitamin section and it comes in a canister and I have found that the cocoa flavored one is good because then you don't have that green algae, alfphalfa flavor thing to deal with!. It makes a great smoothie, I have it as a meal because it is so big and I get 50 items in it at once as is listed on the packaging. I live in NE Missouri and the Gastro Dr I have wanted to do the Botox on me but I said no because it only lasts for 6 mnths. I hope you get a good Dr. too. I know that it is not easy to deal with daily and if you haven't had a good dietitian, I would recommend that too. Just Keep Swimming, Just Keep Swimming!
Stay safe!
Darlia

Tue, Feb 4 10:01am · Gastroparesis in Digestive Health

@nanny23.. greetings! I stand corrected.. my neurologist told me that the Neuropathy I have IS referred to as Autoimmune Peripheral Neuropathy.
Darlia

Tue, Feb 4 10:01am · Gastroparesis in Digestive Health

You should get tested for the FGFR3 antibody

Tue, Feb 4 10:01am · Gastroparesis in Digestive Health

It had been determined that since I have the rare FGFR3 ANTIBODY which is the cause of the Peripheral Neuropathy, it is also the cause of the Gastroparesis since this is caused by the nerves not working properly in the stomach.

Tue, Feb 4 10:01am · Gastroparesis in Digestive Health

@nanny23.. Hi. Same for me. My feet, legs, a little in my hands..it will progressively spread too. Our stomachs use nerves to digest our food. The nerves not working properly contribute to the outcome of Gastroparesis. For me, it is most likely caused by the FGFR3 ANTIBODY so I would not be idiopathic (meaning unknown cause). For until it was discovered that I have this overabundance of this bad antibody, I was told my reason for having Gastroparesis was unknown.
Darlia

Tue, Feb 4 10:01am · Gastroparesis in Digestive Health

Hi @nanny23..Ihad blood work sent to the Washington University in St. Louis, MO by my neurologist. He contacted me when it came back about 5 wks later. He told me that it was positive for the FGFR3 antibody which is a bad antibody gene. He said there is no way to know how it became so high or when it started. It could have been from some trauma. I have had trauma most of my life so, that’s going to remain a mystery I guess. Normal # should be less than 3,000 and mine is 14,000. So, without any other cause so far for the gastroparesis, it would be suspected that this is the cause. This antibody causes neuropathy. If you go to my post on the FGFR3 Antibody, you can read more about it. Be safe out there! Darlia

Tue, Feb 4 10:01am · Gastroparesis in Digestive Health

I do not believe that FGFR3 is caused by an autoimmune disorder. However, I DO have autoimmune disorders separate from the Peripheral Neuropathy.

Tue, Feb 4 10:01am · Gastroparesis in Digestive Health

I’m glad to hear that the pacemaker is successful. I m not to that point YET! But I did take Raglan from 2007 till 2010 approx. It contributed to clinical severe depression and I weaned off in 2010 when a friend who also has Gastroparesis educated me that she’d read that Raglan could CAUSE depression. She said she would continue to try to control it with diet. So since 2010 I’ve struggled with it and attempting to use diet as the only control.
I don’t always succeed.
Recently now I saw a new Gastroenterologist and she seems very educated on it. She is suggesting an Endoscopy at which time she would inject Botox to open up the sphincter and cause the food to empty quicker. Has anyone else ever heard of this or had it done?
Darlia