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Esophageal Dysmotility

esophageal dysmotility difficulty swallowing rna pomerase antibody weak peristalsis

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#1 Keelton

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Posted 26 April 2016 - 07:34 AM

I have been diagnosed with esophageal dysmotility and a positive RNA polmerase antibody. I do not have a diagnosis because I do not meet the scleroderma criteria as of now. I am wondering how common it is to have this problem and did your motility issue seem to stay the same or get worse over time? Mine is pretty bad , I have very weak peristalsis throughout the entire esophagus. I can eat most foods with lots of water except for meat. I am terrified at the possibility of it getting worse and not being able to eat, or does anyone end up on a feeding tube?



#2 Margaret

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Posted 27 April 2016 - 01:16 PM

Hi Keelton,

 

My son was diagnosed in 2006 due to entire esophageal dismotility, + ANA, and + anti RNA-Polymerase 1/111. His larynx and diaphragm was also affected; strictly internal issues.  He was only 18 at the time and had no skin issues or Raynaud's.  Initially, the local Rheumatologist said  scleroderma but the specialist said UCTD (Undifferentiated connective tissue disease).  It's just as serious. I never understood what the difference is between UCTD and sine scleroderma.    :dont-know:     Anyways, he was put on Plaquenil, which is an anti-malarial drug that jump starts the immune system, which doesn't make sense either since it's your immune system over reacting in the first place!!   :dont-know:    After 3 months on Plaquenil, he did tell me his esophagus was working again. Now, 10 years down the road and still on Plaquenil, he still has dysmotility in the lower 1/3 portion and his esophagus is twisted and contorted like a curly straw due to the hardening. He has to have it stretched every 12-18 months.  That appears to be his most serious issue with this disease.

 

This site is wonderful and full of up to date information.  Keep us posted on your journey.      :i-care:  

 

Take care, Everyone. 

Margaret

Mom to Gareth, 27 years old, DS/ASD



#3 dimarzio

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Posted 27 April 2016 - 10:45 PM

I've had aches and pains for a few years which I just put down to getting older and lack of vigorous exercise (though I've always done a lot of cycling, walking and DIY).  The first sign of Sclero was getting cold arms and legs which then turned into full blown Raynaud's and shortly after, the Esophogus problems appeared getting worse quite quickly.

 

I've been having a lot of reflux and recently it's got so bad that I'm choking with it, this has led to one bout of pneumonia and 3 days in hospital on an antibiotic drip.

 

I really have to be careful about what I eat and drink and ensure that I take a proton pump inhibitor nightly.  Tea and coffee don't seem to cause any problems, but alcohol is a bit of a no no as is smoking, which I will quit once my duty frees have run out in a few weeks time - it's not possible to quit when you have cigarettes in the house.

 

My symptoms do seem to be getting worse quite quickly (over a few months) but for some, the symptoms do seem to progress a lot more slowly (over many years), but that's the problem with this illness - it affects everyone so differently and progresses at differing speeds.



#4 Shelley Ensz

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Posted 28 April 2016 - 07:39 AM

Hi Keelton,

 

Welcome to Sclero Forums. I'm sorry that you have esophageal dysmotility, and send my best wishes to you. Even without a distinct diagnosis yet, it would probably be a good idea to be seen and monitored by a scleroderma expert. That way, you can know that a complete evaluation is done, and that any associated disease can be detected as soon as possible. Also, they can be a wonderful help in managing esophageal issues. 

 

Esophageal problems are common in scleroderma, but range in severity from very mild and intermittent to very severe, so you will always hear a chorus of "everyone's different!" around here. Whereas I know, you just want to know what to expect, and what's in store for you. Yet unfortunately none of us have a crystal ball for that. Mostly with issues like this, the real challenge becomes learning how to live with uncertainty. 

 

I have only mild and intermittent trouble swallowing, but even the slightest trouble swallowing is very impressive at the time it's happening. I've learned that I have to eat slowly, chew well, always have a liquid at hand, and pay attention. I tend to run into trouble more when I'm eating out or with others, as I can get distracted, forget to be cautious for a second, and there we go again. Once I realized that connection, I became more alert, and that sure helped avoid issues. Also, I found I need to tilt my head slightly forward, not backward, to swallow and to take pills, especially. It's a bit counterintuitive, you'd think it would be putting your head back that would help.

 

Liquids are often easier to swallow for people (I have the most trouble with dry foods that I haven't chewed well). I've had throat spasms from ice cold food before (too much, too fast, too cold), so consider that the temperature of the food might sometimes be an issue and adjust accordingly. You can also work with a dietitian to design nutritious meals that work around this issue. For example, a smoothie for breakfast might be much better than Melba toast.  Making any soup, but then blending it at the last minute, removes perhaps troublesome chunks but saves all the nutrition. 

 

There are entire cookbooks for people who need or want to be on liquid diets. Tubal feeding is an eventual solution. We've had a few members who absolutely thrived on tubal feeding, feeling like it gave them their life and energy back. One of my friends was able to return to work full time, and another one, with a wicked sense of humor, started her own radio cooking program. So there is definitely a path forward for you, but it will still be an unavoidable adjustment phase, anyway. 

 

:hug-group:


Warm Hugs,

Shelley Ensz
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#5 Keelton

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Posted 28 April 2016 - 08:00 AM

Thanks for the reply. I can eat most foods with water. But steak and some other foods are bad! My motility test shows that I have very weak peristalsis on my entire esophagus with large breaks of no motility. I am so scared it will get worse but I guess there is no telling. Did you actually have a motility test done? Or you just feel like you have trouble swallowing?



#6 Keelton

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Posted 28 April 2016 - 08:04 AM

Hi Judy. It's interesting that your son was diagnosed based on the antibody test and esophageal problems?? Anything else at the time? That's exactly what I have and no where near a diagnosis based on those two things....

#7 judyt

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Posted 28 April 2016 - 04:33 PM

Hi Keelton,

 

Margaret is the one with the son who is unwell, hopefully she will answer you.

 

I would have to say that most of us who have swallowing issues have probably had motility (called Manometry) done at one time or another.   If you take Shelley's advice and get yourself to a Scleroderma expert then that will probably be a natural progression since you are having trouble there.   Any doc worth their licence should react to what you complain about as well as doing the appropriate blood testing and symptom assessments.

 

You are not alone here and you will find that we do have our pet ways of coping.   When I am in hospital my profile shows that I need to have soft foods with extra sauces and gravies.   Not always that palatable but saves choking episodes.   At home I can suit myself and you will find that I would very seldom eat steak per se but a beef casserole is OK.    Potatoes and other root veges need to be very well cooked, I cut them up small first then cook and eat with plenty of gravy.   Mashed root veges are a good choice too.   When I cook at home I will serve other folks with regular pieces and then mash my own, if you are discreet nobody notices.   I find that I often end up with hiccups after eating and that is what I hate most, after an actual choke of course.

 

The nutritionists at my hospital say icecream is appropriate food - Yum and Youghurt too.   Shelley has given you good advice and like most of us these days you will probably own a vitamiser/milkshake machine/blender of some sort that can become a favourite tool.

 

Shelley's comment about cold food has just jogged my memory and apart from icecream which I love I don't actually eat any other really cold foods, I never add ice and usually make drinks at least tepid if not warmer.

 

Bon Appetit!!!

Judyt



#8 Margaret

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Posted 29 April 2016 - 12:45 AM

Hi Keelton,

 

Gareth also had a 20 pound weight loss, major fatigue, and costrochondritis.  Initially, his diaphragm and larynx were also affected. Being only 18 at the time and the Manometry looking so bad, the gastic doctor ordered the blood work because scleroderma was the only disease he knew of that would cause complete esophageal dysmotility.  

 

Like others, he has to wash food down with liquids and is on PPI's for severe GERD.  He's had stomach ulcers due to chronic use of anti-inflammatory pain meds.  He had surgery last October and the surgeon ran into major problems associated with internal fibrosis, so I know he's still got *issues* occurring internally that involve other body parts.  Whether you have the diagnosis of scleroderma, UCTD, or MCTD, they all appear differently in each person and the severity can be severe one month and minimal the next.  It's a complicated disease. I hope you can get to a specialist or at the very least, a Rheumatologist who has training for these diseases.

 

Take care, Everyone.

Margaret

Mom to Gareth, 27 years old, DS/ASD



#9 Joelf

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Posted 29 April 2016 - 08:08 AM

Hi Keelton,

 

Welcome to these forums!

 

I'm sorry to hear that you have oesophageal dysmotility; it must be very worrying for you, especially as you are contemplating becoming pregnant in the near future.

 

Thankfully, I don't suffer with gastrointestinal problems, nor have I ever been pregnant, so can't advise you from my own experience. However, I have included a link from our medical page on Dysmotility Syndrome in Systemic Scleroderma, which I hope you'll find helpful and informative and Judy, Margaret and Shelley's advice is invaluable, as they have had to deal with these problems at first hand.

 

I would also reiterate Shelley's advice to consult a listed scleroderma expert, as this complex disease does require specialist knowledge and expertise, particularly regarding scleroderma and pregnancy.

 

Kind regards,


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