Anyone suffer from Dysphagia, Gastro paresis?? Common with RSD, food not moving into stomach from esophagus..or very slowly?? Help family...

Hugs KS

I have very frequent nausea & vomitting. Vomit few days a week. For the nausea, I take Marinol, Phenergan, Compazine, Zofran. Docs said my RSD spread internally to stomach & that I had gastroparesis. I've had several GI tests run.

Our friend SandyS's daughter Lindsay has been diagnosed with Gastroparesis (secondary to SMA syndrome) and has been horribly sick lately... she is headed for another stint in a children's hospital this coming Sunday.

Sandy may be available via PM if you'd like to ask her some questions about the diagnosis.

So sorry Kathy - The best of luck to you!! Love, Sandy

Just so happens that My Lindsay was diagnosed back in February, after a long bought of vomiting 7 months to be exact. It was so bad that she ended up with SMA Syndrome secondary to Gastroparesis. Needless to say she was sent away so many times and ignored by her doctors. We found a pain management in South Florida that was wonderful. Hospitalized her and had a team of doctors working on her. I have to say that we were finally listened to. It took three weeks of picc-line TPN feedings and an ND tube to have her gain sufficient weight to be released. Unfortunately, as I sit here typing she was hospitalized here in Tampa for severe stomach pain, vomiting and dehydration. As usual they hydrated her and sent her home.

We are heading back down to South Florida on Sunday morning for treatment.

We are also looking into a gastric pacemaker, I understand that there is a doctor at Shans in Gainesville, Florida that puts them in.

Anyway, we have been dealing with this MONSTER for about a year now.
Anything that I can help with let me know.

Sandy

My buddy Sandy is already on this...Love you SandyRI!

i have it too...and acid reflux...
the only thing that helps me is the generic for prilosec i buy it at walmart cause its cheaper...then if i happen to eat real late at night i drink some pepto bismal and all is well.

before this combo i had
reglan
protonix
a million tums

and i still got sick every night
bless you all!

Lori,

How does pepto bismol help? Especially if you were on Reglan. Has the Gastroparesis resolved itself? I am confused. Did they do a gastric emptying test to confirm gastroparesis?

Im sorry i lumped it all together
yes they did the empty test.
they gave me reglan and protonix.

when my insurance changed i told my doctor i couldnt afford those meds any more. so he told me to buy the generic prilosec....and for acid reflux use pepto bismal.....so if i eat something late at night..i take some pepto and it seems to prevent acid reflux from happening

I didn't mean to minimize your problems, Sandy - I know how heartsick you've been over Lindsay's repeated hospitalizations and her terrible pain...it's awful that there's nothing the rest of us can do. I sincerely hope that this trip to JD Hospital does the trick.

keep us posted, and you are always in my prayers!!

Xoxo. sandy

I am so appreciative to all of your responses and so quickly..Sandy S, I am so sorry your Lindsey is suffering so badly from this monster...Easy to fall into the grips of it without realizing it... Is this Dysphagia..Gastro paresis part of the progression of internal RSD???? My biggest complaint is the 90 lb knot in the center of my tummy..24/7. Food not emptying into my stomach from esphogus.. Lori, Lindsey and many others..I am so sorry for your pain and troubles.... RSD causes this Gastro paraesis Dysphagia?????????

Hugs for you all...

K