Swallowing

[beaker]

Sounds like you need to have an Oesophageal Manometry test done. This will test for oesophageal paralysis or dysmotility. One of my earliest symptoms was difficulty swallowing and a feeling that food/tablets were getting stuck. An extension of this is Gastroparesis (paralysis of stomach) which I also have.

Many M.E. people complain of gut dysmotility so it is really an extension of GI tract paralysis/dysmotility.

I too had an Esophageal Manometry ( along w/ endoscopy and a barium). This was a miserable test, but the most helpful. It showed that my
peristaltic waves are all out of sync. Of course, no real reason for my case was able to be given. I would guess ......... ME ;-) well they are
muscle spasms of a sort. Have lots of those elsewhere. Also, it is not uncommon for the cause to be unknown. It can run in families.

However, There are some things that are known to trigger this condition, so it's good to have the test(s) to see what they can find. There are some treatments for things known to trigger this dx and are worth giving a try.
And as Francelle points out, it can be an extension of other gut motility issues. (A good gastro will want to throw in a colonoscopy too.)

Here's a link to a site that I have found a very good resource to understand gastro tests and disorders. At least a good starting place for
the later.
Jackson Gastroenterology

I hope you find out what is causing your problem and can get some relief.
Mine comes and goes in severity.

 

[Francelle]

I agree Beaker that the Oesophageal Manometry test was a miserable test - as I said, at the time I had it done......"probably the most distressing test I've ever had". A Barium Swallow didn't show up the oesophageal problem nor did a Gastroscopy in my case, but both of these tests are necessary to eliminate a range of problems!

 

[Flashster]

Esophageal Manometry

Surely a Esophageal Manometry can't be as bad as a endoscopy??
Had one of those when I first encountered swallowing issues in my lower gullet years ago. Not pleasant, but survivable.

I'd hope that the tube is a little thinner?

My concern here is that it feels like a different sort of swallowing issue to the 'occassional stuck in throat' feeling, and the effects feel even more serious. Its continuous. My neck and throat just don't feel right. Even when swallowing saliva.

I've decided to make my own appointment (i.e. privately, here in the UK) to see an ENT guy. I need some answers as it feels like my whole throat is too weak to swallow (clicks, doesn't feel right and things don't go down). Liquids isn't enough to keep my blood sugar level up.

He'll probably put another scope up the nose and we'll go from there (previous ENT guy did the same and saw only excess mucus and dry areas). Someone has said that the barium is usually inconclusive and that I would have a job swallowing the stuff anyway. I'm not sure whether the video fluoroscopy test uses thinner liquid..?

When I get the energy I feel upset as its worrying my whole family.

 

[Elisa]

Hi

Hi!

I have the EXACT same problem - your posts sould like I was writing them.

I have not been able to swallow solids for a few years now. Started 4 hrs after a root canal - and everyone said oh it will improve blah blah blah.

I have ME/CFS/FM for 15+ years.

I have no idea what this is. My throat is scary all day and night - especially upset at night as it seems so swollen. I can't sleep and have trouble breathing at times. It causes even greater anxiety.

Oh, here's the kicker - my dog got the sme thing at the same time...she has a diagnosis, larengeal paralysis, and no psychiatry referral..ha, ha.

Oh, I have had referrals to neurologists for MND too - myasthenia gravis and als. Its because its called oropharyengeal dyspahgia in my case.

Have to puree EVERYthing - arghhh - such a drag. Have lost so much weight, am in tears to see myself.

I am wondering have you found out anything yet? I had an ultrasound and the up-th-nose-down-the-throat thing a few times. My biggest issue is that no doc seems to care or listen. So first I need to find someone who can take a good clinical history - as that is 95% of the diagnosis.

Am pretty doctor adverse - as I have been through so much and loads of bills - with no answer on any front. This repeats with all troubling issues and in the end the blame is placed on me - like its from anxiety - including fevers etc. Arghhh We've all been blamed enough.

I so hope you still read this forum and can reply. I think it could help both of us!

I will report back on any and all info I gain.

God Bless,

Elisabeth

(Yes I am the one who had a low to med grade fever non-stop for 5 years).

PS Also have cold chills vacillating all night long - just aweful - what a scourge.

 

[Elisa]

Just testing my email of this thread!

 

[Mya Symons]

I have had trouble swallowing for a long time. There are things I have to been avoiding eating for years like large pills, salad and large bread (french bread) which always gets stuck. My problem turned out to be a combination of a very dry throat, acid reflux, thyroid swelling and post nasal drip (all of which (except the thyroid issues) I understand is common in ME/CFS). I try to take sips of water all day long and chew gum a lot. That seems to help both my dry mouth and throat.

Please be sure you go to specialists who can check to make sure it is nothing serious (maybe do a biopsy). It could be something serious such as Esophogeal cancer or Sjogrens syndrome.

My husband's bladder became paralyzed (muscles stopped working) after years of having CFS and FMS. The doctor now thinks it is nerve issues. I wonder if ME/CFS could cause a similar nerve type paralysis of the throat?

 

[czecher]

Hi. I was diagnosed with achalasia in 1998, after losing 13 pounds over three weeks. It's a motility problem, when the sphincter between the esophagus and stomach won't relax enough to allow food to enter into the stomach. In addition, the peristaltic waves of the esophagus is weak and disordered. Up until that time, I was relatively healthy, but it's been a struggle ever since.
The 'gold standard' to diagnose achalasia is the manometry test to measure the peristaltic waves while you swallow some water. It can be uncomfortable; I was unable to finish the test the first time I had it done, but they were able to get enough info for diagnosis. A barium swallow showed immediatly that the barium was just sitting at the bottom of my esophagus, so this test was very short.....no need to continue as the problem was evident.
To fix the problem, a myotomy was done, and I now have reasonably good swallowing. It will never be normal though.
If you are to the point of having difficulty swallowing water, I would visit the ER to at least have a saline/glucose IV. You need to be kept hydrated. You may get even get a Dr there that will admit you overnight and hasten your appm't for a barium swallow/manometry. I think that if your problem is severe enough to interfere with being able to swallow water, it should raise some flags.
Best of luck.

 

[Flashster]

An Update

Hi All,

Quite a lot has happened since my last post.I'm still not diagnosed with anything (other than M.E.) however.

1. My swallowing has got worse. On thin liquids only, and they are a challenge.
2. I'm seeing what I think is a good neurologist, who knows about M.E., but also thinks this is something else;
3. The tests I've had are:

modified barium swallow
numerous neurological exams
2 EMG's & Nerve conduction studys
An in depth blood test

Under suspicion are these diseases:
Myasthenia Gravis (bulbar)
Isaacs Syndrome
Pompe Disease

Motor Neurone Disease appears to be ruled out. Pompe is the nest nastiest on the list so I hope its not that.
There is still the possibility I guess that its something like achalasia, as I understand that can affect the upper throat. I think my neurologist, like me, suspects its something muscular however.

Last week one result in the blood test indicated it may be Isaacs. Many suspect I may have Myasthenia Gravis. The blood tests came back negative for this, but I understand that its still possible to have it.

I currently await the neurologists advice based on the latest blood test and EMG.

Elisa, you do sound a little similar. I am not sure where you are based, but finding a good neuro may be a start.

Flashster

 

[AndrewB]

hey Flashster im having the same problems, on top of being bed bound.
i cannot swallow solids and my throat feels too weak to get anything down.
i live in manchester and this developed during a course of anti-biotics about 4 weeks ago now.
my gp told me to present myself at A & E which i did.
the ENT guys couldn't see anything and i was sent home with anti-depressents.
how are you getting on now ? i couldn't bare this for much longer. its enough to make
me think of just giving up

 

[taniaaust1]

My husband's bladder became paralyzed (muscles stopped working) after years of having CFS and FMS. The doctor now thinks it is nerve issues. I wonder if ME/CFS could cause a similar nerve type paralysis of the throat?

Mya.. by any chance was your husband on Amitriptyline when that first happened?

I ask as that drug almost gave me like a frozen bowel (it stopped functioning.. I was on enemas and very high doses of laxatives for months after trialing that drug.... didnt think I was going to regain function again) and another at this site messaged me when she heard that it basically paralysed my bowel.. saying that Amitriptyline gave her a permanently paralysed bladder.

 

[liquid sky]

Is there any way you can get the doctor to admit you to the hospital where they can give you IV fluids to keep your strength up while doing the tests you need to find out what the problem is? It would be so much easier and faster. I hate to see you put off the barium swallow.

Do you have any pain with the swallowing issue?

 

[Flashster]

Hi Andrew. I suspect your swallowing problems will ease, but let the docs keep an eye on you. I survive purely on liquidised soups and it has kept me going. After a while you get used to it. They suspect a connective tissue disorder may be the cause of my issues, but I've got to have the manometry test in the next month (which everyone says is 'orrible) to rule out acalacia. There's still always the possibility this is severe M.E.

With your recent onset, perhaps the anti-biotics have aggrevated your M.E. and that can make you weak in any part of the body?

If you are struggling for things to eat that aren't solids, try liquidising some tinned soups. You can thin them down with water before heating and make them as thin as you like. That may help you build up some strength and keep you hydrated.

If you have definite problems with liquids as well (choking etc) , then you need to go back to e.r..

Let us know how you are?

 

[Shell]

Hi Flashster.
I've been ill 10 years. I never had real throat problems until the last couple of years. Like you, I do wonder why new symptoms suddenly emerge.
I couldn't swallow and was on a soft diet for a few weeks. I had problems breathing and was pretty unwell. Finally I had an upper resp tract infection. Antibios got rid of the infection and coincidentally the swallowing problem improved too.

However I do still get jaw lock and a kind of swollen tongue feeling which effects my swallowing and talking on and off. Sometimes just for a couple of days, sometimes longer.

I've never had tests to see what's happening. But then I've only very, very recently found a doc who could be bothered at all.
I hope you get the help you need.

 

[Flashster]

Hi there Shell.
All sounds very familiar. Makes me wonder if my problems are in fact M.E. after all.
I seemed to have great problems finding anyone with severe swallowing issues like myself (you've probably come across my many messages about swllowing issues), which have come on over a period of months having had ME for years. Having found no one, it was my persistence that got me in front of specialists who have investigated everything from motor neurone disease to myasthenia. Some said it was ME but others insisted it couldn't be.

Its only in the past few weeks I was sent to someone who has an interest in connective tissues disorders that he suggested it may be this causing the swallowing problems.

Ofcourse as with all things ME, there seems to be no lab test that proves one thing nor another and its all down to the subjectivity and experience of the person examining you.

After all my investigations I seem to be ending up with another condition (possibly) that is equally as untreatable as ME!

All the vey best, and let us swallowing problem folk keep messaging each other.

Flashster

 

[Valentijn]

Hi Flashster.
I've been ill 10 years. I never had real throat problems until the last couple of years. Like you, I do wonder why new symptoms suddenly emerge.

ME might be autoimmune ... in which case the location/tissue being affected/targeted can be pretty random.

 

[Shell]

Valentijn I've wondered about that. I get the feeling sometimes that my throat is the centre of this shambles; can't speak, can't swallow, get URT infections all the damn time and feel my thyroid is swollen. Weird as heck.

 

[taniaaust1]

I think the more severe the ME, the more likely this symptom in it may occur. It seems to be a very common symptom causing big issues for those who have died from this illness if one reads their histories before they died.

(that's not to say that anyone here is going to die from ME.. but Im just trying to get across this symptom seems to be extremely common in the very severe group).

 

[AndrewB]

apparently the antibiotics i was on when this swallowing issue developed are known to aggravate a bulbar reaction in some patients, i tried to tell the docs this in hospital but with my not being able to speak due to lack of tongue mobility and swallowing being so tough, added to the fact they were suggesting it could only be an allergic reaction if there was detectable swelling, i couldn't push the point.
im pretty sure its a bulbar reaction to the antibiotics as as i took them, the further into the course the worse this suddenly developing symptom became.
Flashter is your tongue fully mobile?
My swallowing problems sounds identical to yours aside from the fact that my tongue is 'clumsy' and makes talking difficult, the more i try, the worse the mobility of my tongue gets, do you have any problems with your tongue?

 

[Hanna]

There is one blood test that may point toward an auto-immune disease called scleroderma : anti scl-70. Scleroderma may cause also swallowing a challenge. This test is highly specific (93%) for progressive systemic scleroderma.
Perhaps it would be worth looking also in this direction. I have been suffering from ME for 14 years, including swallowing problems and recently have had this test done. The result came back very elevated. Have appointment with immuno in a few days and perhaps will get more info...

 

[nventor]

I've twice in six years had my esophagus
expanded by my Gastro, easy procedure, good for five years or so,
consists of a light sedative and inserting a large urethane (rubber)
cucumber and stretching/returning the tissue to a nomal state.