Anita and

[Guest guest]

Anita and ,

Hello to you both! I wanted to let you know that there are other

esophagus motility disorders besides achalasia. My husband happens to

have one of them, called Diffuse Esophageal Spasm (DES). With DES,

you have spasms and dysphagia, but the Lower Esophageal Sphincter

muscle relaxes properly.

Anita, his story started out sounding just like yours. He would

have this pain and episodes that would wake him up in the middle of

the night, starting in 2002. His internist suspected GERD, so he

started him on acid-reducing meds. When they weren't helping, he sent

him to a local gastroenterologist. After 1 1/2 years of trying many

different drugs with no relief, his local GI ordered the 24 hr ph

probe and manometry. The tests were starting to show something wrong

with the motility, but it wasn't until we went to a university

hospital (Univ. of Michigan) in 2004 that they definitely ruled out

acid reflux. By the way, the U of M doc checked for Eosinophilic

Esophagitis, also, but didn't find any evidence of it in the biopsies.

Basically, they told him he had an esophagus (E) motility problem,

but they never told us a name. I just figured it was A, because that

was all I could find on the internet at the time about motility

problems. They tried a couple of times to treat it with Botox, but it

didn't work for very long either time (my husband wouldn't recommend

it). He doesn't really have the sore throat, but food sticks in the

middle of his E at times. The spasms are pretty intense for him, also.

After I found this group last summer, we decided to go to the

Cleveland Clinic to see what they could do for him. It was only when

we requested his medical records to go there that we saw they

suspected DES! The Cleveland Clinic docs confirmed the diagnosis and

he is now on Nifedipine, which has calmed the spasms quite a bit,

lessened the dysphagia and has helped him to re-gain 10 of the 70 lbs.

he had lost.

What I wanted to make sure you both know about this is that DES

and A are tough to differentiate. We have learned this from my

husband's experience. One surgeon told us (Dr. Fuller in L.A.) that

you need a very good motility lab to make an accurate diagnosis. He

said that Cleveland Clinic's lab is excellent. Even though they made

their diagnosis last August, on our most recent visit there (end of

January), they repeated the barium and did a high-resolution manometry

just to make sure that he truly had DES and not A. They say that some

people diagnosed with DES are actually just in the early stages of A.

They believe he is one of the really rare people that has a true case

of DES (how lucky is that?). My advice to you both is to seek out the

most qualified hospital or university medical center that is available

to you. If you post where you're from, I'm sure someone can make

recommendations for the best place near you. Good luck to you both

and remember, many here can relate to your frustrations with symptoms

and diagnoses! I know my husband can relate! Take care!

in Michigan