Now you really have my interest - I can honestly say yes to the entire list except the first and last symptoms - chronic cough and burning.
I have been through 2 Upper GI's, (stage 1 Barrett's esophagus), esophogeal motility study (all fine!), swallowing test with videoscope (ok too), and most recently the BRAVO acid monitor 48 hour test implant test which came back NO acid reflux. I am on 30mg Prevacid twice daily.
All of these tests have been done because of my constant feeling of a lump in my throat, ocassional feeling of being strangled and unable to breathe, and unpredictable spells of hoarseness.
If you look at my profile and the pictures I have posted here, you will see my Cervical MRI - guess what it shows? That big honkin' MS lesion is right where I have been pointing at to the doctors for months.
To compound my symptoms and confuse my doctors, I wake 3-4 times a night with intense chest/arm pain and am being treated for Prinzmetal Angina, but I am seriously doubting that is what the pain is from. I had a heart attack Jan. 08 caused by VASOSPASM - no blockages, no physical evidence (angiogram, stress test, echocardiogram,) just elevated cardiac enzymes, that I still believe is somehow linked to my MS spasms. My MI began with a unrelenting spasm in my throat, right at the spot where that honkin' lesion is..... coincidence? I don't think so.
My PCP said see an ENT.
ENT doctor says he thinks the choking is coming from my throat closing to protect my vocal cords from being splashed by stomach acid and being burned. ENT says go back and see my GI doc (for the umpteenth time!)
The GI doctor says my symptoms are all from anxiety. I won't even go there again with what I told him. He says my PCP or MS neuro should prescribe something for the anxiety. I am the least anxious person I know.
My MS neuro says the lesion could not be causing physical pain in that spot because it doesn't work that way, which I understand. But still that is where my knot/lump in throat sensation is felt. And I was feeling this and pointing to this spot for 3 months BEFORE this MRI was done and we saw that lesion.
I am excited to see you generate this list of symptoms because all of my doctors here are stumped! You truly will be the best if you have an answer.
What's up, doc? ;-)
• Chronic cough: For about five years pre-diagnosis, I had chest congestion. My co-workers got tired of me coughing all the time! It also made colds harder to get over, because I would always get bronchitis.
• No hoarseness or post-nasal drip, at least nothing that wasn't caused by allergies. Same with mucus.
• throat clearing: All the time. Feels like I have a frog in my throat.
• lump sensation, tightening, throat pain: Kinda. My esophagus tightens up (esophageal spasm) but it's right behind my sternum. Sometimes extends up into my soft palate, but more often feels like it's right around my ribs.
• difficulty swallowing: I get the 'throat lock' where my mouth is full of liquid, but the muscles responsible for swallowing aren't responding. I also have a bit of difficulty with controlling the swallowing of spit - sometimes it goes down the wrong pipe.
i get all except the coughing. post nasel drip is the worse, makes me sick, feel i have a lump to swallow all the time and want to clear my throat, i have hearing loss of low tones and ringing in my ears and impacted sinus been on steriod spray for year and half. when i take my pills i'll have that sensation when it wont swallow and i panic and think i will choke. I have bad vertigo, senstive hearing seeing ENT next week to see if this inner ear or neuro based, had CT back last august but was too ill to go back for results so this is the next time i get to see him as he canceled begining of mth also seeing neuro soon for other sx. voice gets crokey and change over time like i have a sore throat but i dont.
choke on water and spit sometimes.
Wow! Although I did not have the cold hand, cold feet deal, I definately have the above symptoms. I take aciphex daily because of Barretts but still have a lot of difficulty swallowing.
My cough is unrelenting and seems to be worse when lying down. I need to have a glass of liquid available at night and wake up several times in order to take a drink to aleviate the "tickling" cough I have.
The throat pain seems tobe worse in the AM.
I'll have to echo Laura/Lulu as far as the list is concerned. I have all but the first and last. However, mine are each quite mild most of the time, in my opinion, and I've never felt a need to discuss them with my PCP outside of pollen season. I live in Ohio, though, so that's half the year, or more. I've been prescribed Albuterol from time to time, andd I used generic Claritin daily until a friend said she thinks it was responsible for her long dizzy spell a few years back. Both seem to help somewhat. My favorite allergy drug was Seldane, because it worked for me before the FDA yanked it out from under us, however long ago that was.
Well, again I am an outlier.....
I used to have symptomatic reflux which showed as nocturnal coughing/wheezing, but not since I was diagnosed. Maybe it is controlled by sleeping in my recliner.
I also have occasional difficulty swallowing and chest pain on swallowing. But I have high resting esophageal tone as measured by esophageal manometry and occasionally have severe esophageal spasms ("nutcracker spasms") when I eat, causing complete blockage. My GI feels this is due to the MS and not due to reflux, which they could not document on any of my GI work up (endoscopy, nuclear gastric emptying study, and esophageal manometry).
I have to say that a fair number of people here also have gastroparesis, likely related to the MS and that will influence reflux also.
Here is some of the data I have with regard to subjective complaints of fatigue and sleep disturbance in people with MS. I'm certainly not trying to teach you anything, but offering some of my info in case it may be useful.
Almost 80% of people with MS complain of unusual fatigue which has been linked in some recent studies to the gray matter lesions and cortical dysfunction. This is after accounting for the often greater effort needed by many to perform everyday tasks, for the presence of chronic pain, and for the fatigue of chronic disease (seen in many chronic inflammatory and autoimmune diseases).
As far as sleep, people with MS have sleep complaints three times more commonly than those without the disease. There has also been noted a possible link between sleep disturbance and "lesions that subserve the supplementary motor areas" (I'm not sure exactly where these are). Authors of one study speculated that these lesions might be responsible for the production of the very common nocturnal spasms that so many people with MS have.
Dr. Park, are you looking at these sleeping, breathing, and digestive abnormalities in the context of MS or in isolation as a possible cause of the severe fatigue in MS? I'm fascinated by your line of questions. You've brought a whole new dimension to our forum, something I am very, very grateful for.
I've been wondering how you would factor in the various neurological deficits and the fact that they can affect essentially every function in our bodies. I certainly see the way that a disordered breathing and sleep pattern can cause the many things you talk about, but in MS you have to presuppose an abnormal brain also. Could our cortical disease be responsible for the type of frequent arousal sleep or excited nervous system that you are studying?
When you spoke earlier about behavioral therapy being helpful for the Upper Airway Resistance Syndrome with arrousals every few minutes, I wondered if that would be effective when the cause was a brain disease in the first place. Would that kind of therapy benefit us? Or am I offbase with where you are going with all of this?
Well, enough of my jumbled thoughts. The forum knows I like to fiddle around with things and I'm eager to learn your thoughts. Sorry if this bugs you. I miss practicing medicine.
hoarseness comes and goess
post-nasal drip a constant
throat clearing usually occurs with the hoarseness in relation to post nasal drip.
difficulty swallowing ...just had an Upper GI with barium swallow. It was abnormal. Impression: Esophalgeal dysmotility with tertiary contractions. Non-specific asymmetry within the pyriform sinus region. Apparent gastric fold thickening.
I like the others experience what seems like the throat muscles are not responding, i.e. like my throat is frozen...spit or nasal drip is worse. Solid foods stick in the back of my throat. very seldom have trouble with liquids.
Having endoscopy on 26th also some type of muscle test that I am still waiting for someone to explain to me.
Hoarseness: comes and goes
post-nasal drip: yes
mucous: yes, all day and night, every day
throat clearing: have to cough or clear when I have phlem (I hate that word) it rolls up
lump sensation: yes, right at the pit/groove of my throatbut not always
tightening: tightening in the same area as the lump sensation
throat pain: no
difficulty swallowing: not really - have had mechanical issues w/swallowing in the past
or burning: burning is not in the throat, but in the chest
Took Aciplex once when I was on prednisone. Thyroid is good, only some small nodules in varying areas.
-Shelly MS dx 07
Chronic cough - comes and goes mainly caused by acid reflux which in spite of medication I still suffer with
Hoarseness - occasionally
post-nasal drip, - constantly
mucous - yes tried all types of treatments for this
throat clearing - yes constantly
lump sensation - no
tightening - no
throat pain - yes but comes and goes
difficulty swallowing - only somethings
or burning? do you man acid - see above
Chronic cough, not so much
post-nasal drip, yepper! Better since sinus toncil surgery April
throat clearing yes, form the mucus
lump sensation - I am always clearing. I feel as though I have a lump. I can't seem to swallow it. I often complain of nausia. I think that I am not actually nausious, except that I can't get whatever that is outof the way!
throat pain - yes, I have reflux. Evenif the protonix is working, I am still refluxin the non-acidic stuff -all day and night
difficulty swallowing - Yes. I once had a piece of chicken stuck for 4 days. I got it to pass pefore I could see my Gastero. He streached (dialated) my esoph. Things are better now.
or burning? yes, yes, yes
Chronic cough-EVERY DAY, BUT NOT ALL DAY
difficulty swallowing -SOMETIMES
or burning?-controlled by Prilosec-I have GERD
I am also a heavy smoker. I know...shame on me!
I was DX on Jan. 29Th 1986. In Dec. 1986, I had to Have a trachea tube put in due to spasms, only cough when I have to clear the tube, there are problems with my voice due to spasms.
I do all my own trachea care including changing the tube once a month, it is cuffless due to all the scar tissue. .I use a Shiley 8CFS.
At times spasms make swallowing difficult, I have to be careful not to choke.
After so many years I learned to read my body very well.
The spasms are always worse when I relax, ie: sleep, rest etc...
I am not sure if this is the information you were looking for, but I hope it will somehow be helpful.
DJ, thanks for sharing that info with everyone here. I often wonder how often this tendency toward spasm develops into something much more serious, or life-threatening in your case.
* occasional hoarseness
* occasional difficulty swallowing: food is slower going down and sometimes feels stuck; also, I can acutely feel food and liquid as it moves down my throat, like how ice water feels going down on a hot day. Don't know if that makes any sense!
Occasional hoarseness only.
Before I answer your questions and spill the beans, I think it's safe to say the most of the people who gave answers on this post has a majority of the symptoms that I asked about. These symptoms are the classic findings in laryngopharyngeal reflux disease. This is when acid comes up into the pharynx, causing inflammation and irritation, leading to some or all of the above symptoms. It's thought to be due to a dysfunction of the upper esophageal sphincter, as opposed to a dysfunction of the lower esophageal sphincter that's seen in GERD.
The problem is that you only need microscopic amounts of stomach juices in your throat to cause these symptoms. For the double-probe pH studies, there's a certain number of reflux episodes at a certain pH to meet the criteria for LPRD. Using esophageal manometry, UARS patients (see next paragraph) have been shown to have significant negative pressure in the chest during an episode. You also have to realize that it's not only acid coming up, but sometimes bile, digestive enzymes and even bacteria. Studies have shown finding H. pylori and pepsin in middle ear, sinus and lung washings.
Upper airway resistance syndrome (UARS) is a variation/precursor to obstructive sleep apnea (OSA), where you don't officially meet the criteria for obstructive sleep apnea. You need at least 5 apneas or hypopneas every hour on average to say you have sleep apnea. Each episode has to last at least 10 seconds. But it you stop breathing 25 times every hour and wake up after 1-9 seconds, then your total score is 0.
UARS patients have a typical upper airway anatomy, where due to smaller jaw structures (with dental crowding) the tongue naturally sits higher and further back. Normally when on their backs, the tongue falls back somewhat due to gravity. But in UARS patients, there isn't too much space, so there's very little space behind the tongue. When in deep sleep, due to muscle relaxation, you stop breathing and wake up quickly, then turn over. Most people with UARS learn to sleep only on their sides or stomachs.
Dr. Guilleminault, a pioneer in sleep medicine that first described UARS, stated that OSA patients have underactive nervous systems, whereas UARS patients have a normal or hyperactive nervous systems (that's why they wake up too quickly into light sleep). As I've mentioned before, chronic long-term deep sleep deprivation can lead to a low-grade physiologic stress response. This can heighten not only your nervous system, but your immune system as well. Robert Sapolsky, in his very interesting book, Why Zebras Don't get Ulcers, makes the suggestion that repeated low-grade stresses ratchet up your immune system so that it stays hyperactivated for too long. This is in contrast to one big stress that ends, and the initially heightened immune system then drops to below normal, and then back to baseline. This is why many people get sick AFTER a very stressful event.
To be honest, before I started to participate on the MS forum, my understanding of MS was identical to yours. When Laura (LGK54) posted a question about sleep and MS, I was fascinated by what she had to say about the high incidence of sleep problems and the fact that a number of the members were on CPAP for sleep apnea. As I started reading through the MS forum, many of the symptoms sounded remarkably like what I seen in my patients with upper airway resistance syndrome. Symptoms include chronic fatigue, unrefreshing sleep, not being able to sleep on their backs, various cysts and nodules throughout the body, cold hands and feet, various GI issues, GERD, LPRD, depression or anxiety, hypothyroidism, low blood pressure when younger (and later on sometimes turning into high blood pressure), headaches, migraines, sinus problems, TMJ, lightheadedness, and one parent that snores heavily.
Many patients with UARS progress later on in life to obstructive sleep apnea, especially if they gain weight. Many people with UARS have a parent that has OSA.
Frankly, I was very surprised to see that the vast majority of respondents had each of the three other questions that I asked (sleep position, cold extremities, parental snoring, and now laryngopharyngeal reflux disease). Maybe it's more due to selection—only people with these conditions are replying.
Here are my conclusions about MS and UARS:
1. The similarities in symptoms are total coincidence and to be taken with a grain of salt, or
2. There is a link or a connection, but there may be a common point of branching higher up in the "cascade," or
3. both conditions have symptoms that overlap, although they are from two different origins, or
4. one may directly or indirectly cause or aggravate the other.
I think it's a toss up amongst all four options. One thing I'm much more appreciative of now is how prevalent sleep issues are in patients with MS (thanks, Laura). With the incidence of OSA to be up to 24% in men and 11% in women, and much higher if you include UARS, it may be worthwhile to at least screen for it anyway, even if you don't have MS. So what I'm seeing may be the natural incidence of sleep-breathing issues in the normal population (who just also happen to have MS).
I think the next step for me is to examine the upper airway anatomy to see if MS patients have the typical appearance that I see in UARS: the voice box and the tongue collapses severely when lying on the back, restricting the upper airway breathing passageways.
I'm in no way suggesting that MS is caused by a sleep-breathing disorder. I'm just very fascinated by the similarities between the two, and so I think it's worthwhile investigating it a little further.
You have some great questions. I have some very speculative thoughts on this, but I don't think this is good time or place to address them, unless I have more data or evidence to back it up. One thing about MS and breathing is that you would think breathing problems would be more of a central component, since the lesions are in the brain. I'm not sure if people with both MS and OSA have more obstructive or central.
Someone a while ago told us about a study showing that a huge number of patients with MS meet the definition of sleep apnea and that 50% of them were obstructive. So both types are seen in MS. I'll see if I can rustle up that study.
With regard to what you would expect, I suggest that, while there would be plenty of reason to have central apnea, the muscular effects of MS can lead to an obstructive pattern in several ways. We have upper airway and chest spasms which are often tonic and sustained. We also have loss of motor function seen as weakness or flaccidity. Both of these processes are seen in the breathing and swallowing symptoms we report.
On a more personal note, I have an extraordinarily small jaw due to congenital deficiency of 13 permanent teeth. They have to use a pediatric tray to get impressions. My TMJ lost all it's cartilage by the time I was mid-30's, and is permanently subluxed. My jaw excursion is about 25mm. I wonder what kind of sleep I would have if I slept lying down instead of propped up so far. (I'm the one sleeping 12-14 hours a day in about 5 hitches.)
Again, I thank you for a fascinating new look at one of our worst problems - fatigue and cognitive difficulty.
Thanks for the information and sharing your story.
A thought just came up for another question....
Me, the TM lady..
I have been told I have hiatal hernia, and I have reflux. Hardly ever happens anymore, since I don't eat late at night, and gave up alcohol. I did have a little "burf" (cross between burping and barfing) the other night, first time since starting CPAP. Kinda scary, wondering if you're going to pollute your mask.
Chronic cough-, Have had, not for a few years. Esp when I was on an ACE inhibitor.
post-nasal drip-, Always a little something trickling back there
mucous -Not much since severe allergies successfully treated
throat clearing- ditto. I sort of learned not to do it because it irritates my husband, and because I sing and the director says it's bad for the voice--swallow a lot and drink water instead.
lump sensation- Yes. Sometimes I get esophagus spasms, if I eat too quickly, then even drinking a lot of water doesn't get it totally relaxed.
throat pain -ditto. Kind of mid-chest
difficulty swallowing -sometimes
or burning? When there is reflux. Chocolate is a big contributor.
Thank you once again. So what is the treatment for laryngopharyngeal reflux - and does the cause matter? How is it dx'd? I'm sorry if this question belongs in your forum. Just wondering if there would be a different course when and if it's found to be MS related.
I did not have the problems I have now pre-MS.
This thread is incredibly educational....
I did order your book and it arrived today - in the very first chapter you have given me an explanation of why I have this choking happen where I literally can't breathe. LPRD fits me to a tee and like Shell I now want to know how its treated. I sure hope its in the book. My GI doc decided it was anxiety that was causing me to choke. Thank you, thank you, thank you for making this problem clear. Perhaps I will give him your book after I am done reading it!
Laryngopharyngeal reflux disease, or LPRD is probably one of the most common conditions that ENTs see, but treated in isolation, results are less than ideal. The textbook explanation is that it's a dysfunction of the upper esophageal sphincter so acid leaks up into the larynx, causing inflammation and all the other throat symptoms that I listed above. LPRD is different from GERD in that you don't have to feel anything in the stomach.
The standard recommended course of treatment is TWICE daily of any of the proton pump inhibitors (Prilosec, Aciphex, Nexium, Prevacid, Protonix, etc.) to be taken BEFORE breakfast and dinner. Once daily is not good enough. It also has to be taken for a long time. Our academy recommends months. You also have to address the typical dietary changes such as not eating before bedtime, avoiding alcohol before bedtime (within 3-4 hours for both), avoiding spicy or citrusy foods, etc. It's similar to the GERD diet. Not eating late before bedtime is probably the single most important thing that you can do (alcohol is #2), even more important than the medication.
This regimen works most of the time to various degrees, but the symptoms usually come back weeks, months, or years later. There are a few problems with this approach: although you're lowering the acidity of your stomach juices, it's still somewhat acidic. Your stomach contents also include bile, digestive enzymes and bacteria. Microscopic amounts of these substances can wreak havoc on your very delicate voice box structures. These materials have also been shown to reach the lungs, ears, and sinuses. This can cause inflammation in these areas which can present as your typical "infections."
The other reason for the lump sensation and the tightening that many people feel in their throats is probably due to spasming of the cricopharyngeus muscle. This is part of the upper esophageal sphincter and is the muscle that wraps around the esophagus behind the voice box. When irritated or if aggravated by other stress factors that can cause muscle spasm, you can get the classic "lump" sensation with difficulty swallowing, or a tightening sensation.
So who do these juices come up to the throat in the first place? As I more fully describe in my book, many people have jaw narrowing and dental crowding that predisposes the tongue to fall back more when lying flat. Then during deep sleep along with muscle relaxation, the tongue falls back completely and begin to obstruct. Most people wake up very quickly (less than a few seconds) so it's not an apnea. People with these issues know not to sleep on their backs. The problem is that despite sleeping on their sides of stomachs, it's not good enough. When you obstruct, but before you wake up and turn over, a tremendous vacuum effect is created in the chest and throat which suctions up microscopic amounts of stomach juices into your throat. Sometimes you'll be fine until you get a simple cold or an allergy attack and a vicious cycle happens, where due to swelling, the tongue falls back easier and more juices are brought up, causing more inflammation. When the inflammation spreads to your nose, this makes your nose more congested, causing more of a vacuum effect downstream, causing your tongue to collapse even easier.
This is why taking an acid reflux medicine doesn't help consistently (since it does nothing for the reflux—it only lower the acid content). When it does work, it probably works by promoting less irritation and inflammation of the throat.
Furthermore, since your upper molars are more narrow, the side walls of your nasal cavity is more narrow, since the side walls follow the upper jaw. So if there's any inflammation in the nose, it gets stuffy faster. Also since the angle between your septum and your nostril is more narrow, your nostrils will cave in more during inspiration.
So the overall effect is that if you have this condition (UARS), you'll never feel refreshed in the morning because you're unable to get any deep sleep. This can create a physiologic stress response that can wreak havoc on your nervous system (makes it hypersensitive), your immune system (also makes it more hypersensitive), and affects almost every hormone in your body.
I also see what can be described as "migraine" attacks in various parts of the body. But we can talk about that another time.
Could LPRD be misdiagnosed as Nutcracker esophagus or is that part of the constrictive action- a lot of us have heard that one! And a whole bunch of us have undergone esophogeal motility tests and videoscoping.
How about Barrett's - although that is confirmed by a pathology report, could stage one also be a misdiagnosis?
Why don't all doctors explain this stuff to their patients instead of giving a one sentence diagnosis if we're lucky and then dismissing us with a pat on the head? sorry, I know you can't answer that one but we're not feeling so friendly toward doctors here today.