Re: Anita and

[Guest guest]

, thank you so much for the info! Up until I began having swallowing problems I never knew about all the different motility disorders. I have never heard of DES before, but I'm going to do some research about it and see what I can find. The Cleveland Clinic is only a short distance (well, in the same state, at least) so this gives me hope. Thanks again! let45ride <brendacoyle@...> wrote: Anita and , Hello to you both! I wanted to let you know that there are otheresophagus motility disorders besides achalasia. My husband happens tohave one of them, called Diffuse Esophageal Spasm (DES). With DES,you have spasms and dysphagia, but the Lower Esophageal Sphinctermuscle relaxes properly. Anita, his story

started out sounding just like yours. He wouldhave this pain and episodes that would wake him up in the middle ofthe night, starting in 2002. His internist suspected GERD, so hestarted him on acid-reducing meds. When they weren't helping, he senthim to a local gastroenterologist. After 1 1/2 years of trying manydifferent drugs with no relief, his local GI ordered the 24 hr phprobe and manometry. The tests were starting to show something wrongwith the motility, but it wasn't until we went to a universityhospital (Univ. of Michigan) in 2004 that they definitely ruled outacid reflux. By the way, the U of M doc checked for EosinophilicEsophagitis, 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 thatwas all I could find on the internet at the time

about motilityproblems. They tried a couple of times to treat it with Botox, but itdidn't work for very long either time (my husband wouldn't recommendit). He doesn't really have the sore throat, but food sticks in themiddle 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 theCleveland Clinic to see what they could do for him. It was only whenwe requested his medical records to go there that we saw theysuspected DES! The Cleveland Clinic docs confirmed the diagnosis andhe 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 DESand A are tough to differentiate. We have learned this from

myhusband's experience. One surgeon told us (Dr. Fuller in L.A.) thatyou need a very good motility lab to make an accurate diagnosis. Hesaid that Cleveland Clinic's lab is excellent. Even though they madetheir diagnosis last August, on our most recent visit there (end ofJanuary), they repeated the barium and did a high-resolution manometryjust to make sure that he truly had DES and not A. They say that somepeople 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 caseof DES (how lucky is that?). My advice to you both is to seek out themost qualified hospital or university medical center that is availableto you. If you post where you're from, I'm sure someone can makerecommendations for the best place near you. Good luck to you bothand remember, many here can relate to your frustrations with symptomsand

diagnoses! I know my husband can relate! Take care! in Michigan

[Guest guest]

Dear Anita and ,

Thank you for sharing your struggles with depression. I too dealt with this

miserable illness. I resorted to anti depressants with no regrets.  Today I

would like to wean myself of those meds but it will be done slowly.

My experience was constant stomach pain and tiredness. I would spend most of the

day laying on the couch or sitting in my recliner curled in a blanket. My family

was very supportive but it was myself that finally got myself to talk to my

social worker. She immediately prescribed the anti depressant to help me me

through it. 

Today I feel better. Still some bad days, but on those days I pamper myself with

doing " nothing " and it's ok.

I hope you find answers to get you through this. Prayer is a part of my day.

When I feel I can't do this one more day, I pray to get through just this one

day and see what tomorrow brings. My prayers have always been answered. God will

hold you up on those days if you need him too. It makes him feel loved!

Please reach out to this group or any other when you need to talk. We are here

for you always.

God's Blessings,

Jackie S.

From: anita <awristen1@...>

Subject: Re: [ ] Thanks Lottie

Date: Saturday, September 5, 2009, 10:21 AM

 

,

I remember oh so well the depression.

I had it bad. Would talk to my Dr and he would say you are alive and

have no reason to be depressed.

Well that would really anger me. But I

still fought boughts of depression.

We have a 2 story and I would not

go upstairs once I come down till night fall.

Some days I would pass

the stairs and have a very vivid image of me running up stairs get the

pistol and BANG.

And see the results. I would sit down cry and pray the

devil to get away get out of my house you are not welcome here.

This

was an ongoing battle for months on end.

Finally the images went away.

Still have emotional ups and downs.

Some days I would just cry and cry

without a reason. I still have those moments but pass it off

as another side effect guess Sprycel messes with the hormones too.

I have discussed this with my Dr's time and time again but no one want to look

further into it.

Thank God the severity of the depression went away. And I do my best

to remind myself of all the wonderful blessings I have in my life and

that I do have a life. Sure I do not have an abundance of energy and

the joint and muscle pains are sometimes almost unbearable. That is the

days I take pain pills if there is something I want to do.

The lesson I learned is I do not have to accomplish anything in one day so what

if I do not get back up stairs to make a bed and if I only get the laundry

washed and dried it will wait for another day to get it put away. For holiday

when all are here it took me a whole week to dust the down stairs and two whole

days to get the floor mopped and swept. I did get it accomplished. And the

wonderful part is I am here to enjoy the holidays and watch my grand babies.

I remember sleeping for several months in the beginning. Walking to the bath

room was a major ordeal. But I made it.

Do not put a time line on yourself and stop being hard on your self. Your body

is having a great big fight with this disease and needs to take all the breaks

you can give yourself whether emotionally or physically.

God Bless you give yourself a break.

Anita

____________ _________ _________ __

From: <wendyphillips54>

groups (DOT) com

Sent: Saturday, September 5, 2009 9:58:55 AM

Subject: [ ] Thanks Lottie

Thanks Lottie,

I am having too many medical problems to have much of a life right now. I

don't go anywhere unless it's to a dang Dr. I feel like crap all the time and

yes, I am very depressed. I hope everyone else is having better luck than me.

Blessings,