Any experience with dysmotility????

[from2344]

Hello again, I recently posted on here about problems swallowing. After the feedback I received I went and saw my Dr. and she ordered a upper GI.

I went today and had the test done and was told I have esophageal dysmotility and that my Dr. will be sending me to a specialist and to see my Neuro Dr.

My question is has anybody heard of this or experienced this?

I have had this for about 3 years and it is progressing more and more. I am constantly beating on my chest because it doesn't ever feel like my food or liquid is going down right and now I know its because it isn't.

I have read about it today but my biggest fear is being fed through a feeding tube and I am not finding a lot of info. on what happens in time.

I am only 42 and I have myself pretty freaked out that I will be 50 and no longer being able to eat or drink. I hope I am wrong and I hope someone else's knowledge can carry me through until I can see the right Dr. for this.

Thank you in advance to anybody with an answer for me.

[KatieAgain]

I have not personally, but both my Aunts had this. They had a procedure where both of their throats were stretched and that solved the problem. I was told they both tried medications too.

This can happen to people with a plethora of diseases, to include MS.

Bottomline, gastro feeding is worst case scenario. There are possibly other options.

I would tell you to stop worrying, but that probably would not be very helpful. But, I will say again...gastro feeding is worst case scenario...don't assume the worst and hope for the best.

[from2344]

Thank you, that does help me alot. I seem to get carried away with myself at times and just to know there is someone else that has had this and got help gives me comfort.

I really appreciate your feedback

[naphappy]

Yes!

Tira,

I am so happy to see your post.

I have been silently battling this for a few years. I was just trying to monitor it.

I did tell my Neuro and her team that I occasionally would have issues trying to start my swallow but eventually it would work.

This past year it has progressed. I didn't really realize the extent because I had others issues going on as well.

I have lost 40 pounds in 9 months.

I teach and a few of us went to lunch on a in-service day.

Included in our small group of four were two of my teaching partner and our speech and language pathologist.

I stopped eating partway through the meal.

At that point I was on the receiving end of a very heartfelt and direct conversation with my friends.

They had noticed some problems and had asked our other friend to observe me.

She typed a list and had me call my neuro who ordered the modified barium swallow.

I have been diagnosed with moderate dysphagia and go for the esophageal swallow test on the 15th. The speech and language pathologist who administered the first test told be there were coordination issues as well with my esophagus but that she couldn't diagnose them.

Sorry this is so long, but it sounds like we are having the same problems.

I have modified what I am eating and begun to use thickener in my drinks.

I too am concerned about the feeding tube possibility but not as scared as I am about choking.

Please keep in touch and take care.

[kebsa]

i had a lap band placed to help with weight loss some yrs ago and initially i was working well, i coped well with the diet and really had no problems with food sticking unless i "broke the band rules" but after a about a yr i started having problems with food not going down well and then vomiting or regurgitating later-

at first we thought it was just a case of adjusting the band, that it was too tight but it did not help and no matter how careful i was with my diet i was unable to keep my food down unless i stuck to food and viatmized diet- all this was pre ms diagnosis but certainly after i had other symptoms later assigned to MS.

Anyway it got very frustrating as eventually the band surgeon basically said i must have been cheating with the band rules and i definately was not- i was left with only coping by using vitamized foods and liquids but this means that weight loss becomes less likely. plus over time the swallowing problems got worse, i got to the point where even vitamised food would not go down properly and i ended up with chest infections due to aspirating stomach contents in my sleep even when sleeping sitting up! the surgeon still insisted it was just my poor behaviour.

in the meantime i had been diagnosed with MS and when i told the surgeon that he said that ms could account for the problems i was having but that removing the band would mean i would gain weight so he still insisted i try to Live with the problem . i struggled for the next couple of yrs \, never eating in front of other or without a bowl to vomit in at hand, and a more and more restricted diet.

then i started having problems keeping fluid down to the point of getting dehydrated-, i was sent for a batium swallow but they could not do it as i could not swallow any of the barium and i was sent to the emergency room. after a few days of investigations and observations i was diagnosed with dysmotility syndrome but my neurologist did not feel it was ms related- i had the band removed as i was told i was at risk of serious aspiration pneumonia and possibly ruptured esophagus because food was not going down -just sitting there for days but with lots of very abnormal contractions of the muscles in the esophagus.

having the band removed has certainly made life more bareable but i still have signifcant problems. i had been told a gastric tube was the next option but thankfully things have improved enough that its not necessary. i still have to stick to soft food, particularly meat, i can only managed minced/ground meats.

i sleep sitting up and every now and then i need a few days on fluids only just to let things settle down but i have not had a chest infection since the band was removed and we worked out a manageble diet. in more recent times my gag relex has been descrbed as being a bit slow so i have to be careful with liquids, being sitting up with chin kind of tucked in a bit and drinking slowly ( n big gulps).

my neuro is still not sure about wether this is an ms thing or just a seperate medical problem he described it as being an uncommon problem unless in very severe MS which i certainly am not but too me it fits with the fact i have no bladder control but have severe and rather painful bladder spasms, and also have limited bowel control-the bowle is meant to contract in the same way as the esophagus to help keep food moving through so to me they all seem similar issues

since being diagnosed i have met a few others with the same problems and they have all had MS. i don't think the band caused it i think the prescence of the band just made the problem more obvious- my only regret is not putting my foot down earlier about finding an answer even if it meant losing the band- those yrs of persistent vomiting also wrecked my teeth from the stomach acid.

i had my band removed 2 yrs ago and i think that the dysmotility has been stable since then or perhaps only minor change so feeding tube may still be a distant possibility but deal with it when and if it happens

if you are struggling having you considered seeing a dieticina for some suggestions on dietary management- they can suggest textures that are easier to manage- just 2 quick examples
red meat is very dense, chicken/turkey may be easier and always with some kind of sauce or gravy

i find fresh bread is difficult, even when you chew it well it can just change into a very sticky texture, but toast is fine as it is drier
always have a drink handy when you eat incase something feels like it is sticking, sometimes a sip feels like it can help wash it down a bit

good luck

** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **

[owlnona]

My neuro always asks at each visit if I'm having any eating problums. When I said yes he asked me several questions,then sent me to a gastroenterolgiost. After several tests,in hospital, I was found to have 3 active ulcers on the tube that is just past my throat,I'm now on special meds & a strict diet eliminating several foods., My Gastro agreed that having MS could also create problums
with eating,as I have irritation there as well.
Keep us posted God Bless Nona

[from2344]

Tira,

I am so happy to see your post.

I have been silently battling this for a few years. I was just trying to monitor it.

I did tell my Neuro and her team that I occasionally would have issues trying to start my swallow but eventually it would work.

This past year it has progressed. I didn't really realize the extent because I had others issues going on as well.

I have lost 40 pounds in 9 months.

I teach and a few of us went to lunch on a in-service day.

Included in our small group of four were two of my teaching partner and our speech and language pathologist.

I stopped eating partway through the meal.

At that point I was on the receiving end of a very heartfelt and direct conversation with my friends.

They had noticed some problems and had asked our other friend to observe me.

She typed a list and had me call my neuro who ordered the modified barium swallow.

I have been diagnosed with moderate dysphagia and go for the esophageal swallow test on the 15th. The speech and language pathologist who administered the first test told be there were coordination issues as well with my esophagus but that she couldn't diagnose them.

Sorry this is so long, but it sounds like we are having the same problems.

I have modified what I am eating and begun to use thickener in my drinks.

I too am concerned about the feeding tube possibility but not as scared as I am about choking.

Please keep in touch and take care.

I am so relieved and happy to find someone that can relate to me. I am also sorry your experiencing this too.

I haven't said anything to anybody about my weight loss but in the past 4 months I have lost 37 lbs. I used to drink about 3-4 pepsi's a day and I stopped when I got dx. I was really hoping this was why I lost the weight but now hearing your story I am not so sure.

Do you have problems with nausea and vomiting? I am really not sure if its related to the swallowing problem or not but I began vomiting off and on about 5 years ago. The Dr. did tons of testing and told me I have cyclavomiting (probably spelled that wrong) and that every so often it would just come about. The problem was I would have to go to the er to have IV's from dehydration.

Long story short my back surgeon (who discovered my ms) told me she thought the nausea and vomiting was caused from the ms and finally I was prescribed meds to help it. I now take promethezine and it has been a God send for my nausea.

I have tried different things and different textures for drinks but it doesn't seem to help although my issue is so on and off through the day it may help and i just don't realize it. I know this must sound crazy but I have had issues swallowing from my saliva without any food or drink. It's a very strange disease and thankfully for me it is progressing but I don't have issues with every bite or drink.

I was also told my my GP before the test was ordered that she thought the lesion on C-4 could be the issue because it controls the esophagus nerve. She is not a specialist so I am not sure if it's correct or not just something else for me to research lol.

Not sure if I have made any point here I am just so happy to find someone I can relate to lol. I wish you the best of luck and please let me know where this goes with you. I see my Dr. on the 11th of this month and will see then what the plan of action is. I will keep you updated and please do the same

[from2344]

i had a lap band placed to help with weight loss some yrs ago and initially i was working well, i coped well with the diet and really had no problems with food sticking unless i "broke the band rules" but after a about a yr i started having problems with food not going down well and then vomiting or regurgitating later-

at first we thought it was just a case of adjusting the band, that it was too tight but it did not help and no matter how careful i was with my diet i was unable to keep my food down unless i stuck to food and viatmized diet- all this was pre ms diagnosis but certainly after i had other symptoms later assigned to MS.

Anyway it got very frustrating as eventually the band surgeon basically said i must have been cheating with the band rules and i definately was not- i was left with only coping by using vitamized foods and liquids but this means that weight loss becomes less likely. plus over time the swallowing problems got worse, i got to the point where even vitamised food would not go down properly and i ended up with chest infections due to aspirating stomach contents in my sleep even when sleeping sitting up! the surgeon still insisted it was just my poor behaviour.

in the meantime i had been diagnosed with MS and when i told the surgeon that he said that ms could account for the problems i was having but that removing the band would mean i would gain weight so he still insisted i try to Live with the problem . i struggled for the next couple of yrs \, never eating in front of other or without a bowl to vomit in at hand, and a more and more restricted diet.

then i started having problems keeping fluid down to the point of getting dehydrated-, i was sent for a batium swallow but they could not do it as i could not swallow any of the barium and i was sent to the emergency room. after a few days of investigations and observations i was diagnosed with dysmotility syndrome but my neurologist did not feel it was ms related- i had the band removed as i was told i was at risk of serious aspiration pneumonia and possibly ruptured esophagus because food was not going down -just sitting there for days but with lots of very abnormal contractions of the muscles in the esophagus.

having the band removed has certainly made life more bareable but i still have signifcant problems. i had been told a gastric tube was the next option but thankfully things have improved enough that its not necessary. i still have to stick to soft food, particularly meat, i can only managed minced/ground meats.

i sleep sitting up and every now and then i need a few days on fluids only just to let things settle down but i have not had a chest infection since the band was removed and we worked out a manageble diet. in more recent times my gag relex has been descrbed as being a bit slow so i have to be careful with liquids, being sitting up with chin kind of tucked in a bit and drinking slowly ( n big gulps).

my neuro is still not sure about wether this is an ms thing or just a seperate medical problem he described it as being an uncommon problem unless in very severe MS which i certainly am not but too me it fits with the fact i have no bladder control but have severe and rather painful bladder spasms, and also have limited bowel control-the bowle is meant to contract in the same way as the esophagus to help keep food moving through so to me they all seem similar issues

since being diagnosed i have met a few others with the same problems and they have all had MS. i don't think the band caused it i think the prescence of the band just made the problem more obvious- my only regret is not putting my foot down earlier about finding an answer even if it meant losing the band- those yrs of persistent vomiting also wrecked my teeth from the stomach acid.

i had my band removed 2 yrs ago and i think that the dysmotility has been stable since then or perhaps only minor change so feeding tube may still be a distant possibility but deal with it when and if it happens

if you are struggling having you considered seeing a dieticina for some suggestions on dietary management- they can suggest textures that are easier to manage- just 2 quick examples
red meat is very dense, chicken/turkey may be easier and always with some kind of sauce or gravy

i find fresh bread is difficult, even when you chew it well it can just change into a very sticky texture, but toast is fine as it is drier
always have a drink handy when you eat incase something feels like it is sticking, sometimes a sip feels like it can help wash it down a bit

good luck

** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **

Kebsa, that is so horrible what your Dr. did to you I am so sorry

Ya, I have thought about a dietician but the problem is when my Dr. asked me if I was eating mashed potaoes and a steak which one I could swallow the answer for me is I really don't know. It's very strange like this morning I had to quit drinking my water and coffee because it just kept not wanting to go down but my grandbaby is feeding me her cereal and I can eat it just fine. i don't understand much of any of this and I am hoping to get some answers soon. Thank you for your advice and your story and the best of luck with you.

[naphappy]

Tira,

Sorry haven't been responding like I should.

Yes, I have issues with nausea and vomiting. But not always.

If I really eat slowly or just a tiny bit at a time, I can try to avoid it.

I find myself not eating just to avoid the nausea- not good.

I too choke on my saliva. I get so thirsty but even gum make me start to cough and sputter.

I recently had a big issues with my regular symptoms including balance and vision.

I checked at the Stat Care and was dehydrated and had a kidney infection.

Trying to hydrate and keep medicine down can sometimes be an issue.

I went yesterday for the esophageal barium scan. I need to call today to give the dr. a time to review the results with me.

The resident who did the scan wasn't very informative. I like to know what is going on at the time and he gave me the standard "your dr. will talk to you" conversation.

The GI doctor thought I might need my esophagus stretch but was concerned with the sedation.

I haven't had issues with that in the past. So I will talk to him about that when I have the chance.

Please let me know how you are doing.

Denise

[hobbit]

Esophageal Dysphasia

By the time my Doc and I realized what the problem was it was too late to use steroids. It takes approx. 84-96 hrs. for me to process foods.

I have had this condition for over a year and my Neuro said it's as good as it is going to get. My esophagus was scoped and is fine.

Liquids are the easiest to swallow. A lot depends on how I'm feeling, if I'm overtired or flaring I don't even try solids. I've also lost a lot of weight not to mention all the loose skin I'm carrying around now (lost about 100 lbs). My biggest problem now is because my whole digestive system is FUBARed, I have no appetite and have to force myself to eat. A feeding tube is also my biggest fear.

Good luck.
Anna

[kebsa]

from2344,

what you describe does not surprise me so much. sometimes people with swallowing problems will find it diffuclt to get water and fluids down and may cause them to cough and splutter, feel as if they are going down the wrong way or just not going down, this can be an issue if the gag relex is weak and if the esophagus is not contracted very well it is not able to push contents along. something like baby cereal has alittle body to it and is easier to control when you have a weak gag relex and then the esophagus may be able to handle that texture better


i can manage fluids ok as long as i am sittin up right in fact i make sure i always have a drink to hand when i am eating. meds i have to take for bladder spasms have a side effect of drying ones mouth, i produce very little saliva and for me this makes it harder to get food down- if i have just had a dose of my probanthine within an hour or so of a meal my mouth will be very dry and it is much harder to swallow food then, i have artifical saliva spray but a drink is a better option as far as i am concerned. if i tried to eat a piece of grilled steak i would have major problems and i cope better with toast than fresh bread

i realy think that seeing a speech path and dietician who deals with swallowing problems will be able to properly assess things like the gag refle, make recommendations about food textures and even tips like head position that amke swallowing easier

at present this is a managable problem, the dry mouth is a nuisance but i need those meds so i just always have a bottle of drink handy-its wrecked my teeh though. severe reflux for yrs before i was properly d as well as the dry mouth has meant my teeth have suffered a good deal. thats the nature of chronic health issues though, you solve one problem and create another!!