Need Help with Twitching/GERD

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GinniferLynne

Well-known member
Need some true help/info here.

Most of you "guys" know I'm a "vet" that has been twitching 24/7 calves (with widespread elsewhere) for 20 months now.

Back in March, I began that "lump at the base of my throat" feeling like food wasn't going down. Saw an ENT, went back on Prevacid (have had GERD for about 8 years on/off - sometimes really bad) and it got better. Since March, I've been getting this feeling occasionally, but now it has become really bad and I have this feeling for about 1-2 hours after I eat. My GP has referred me to a Gastro doc for a "pillcam" study and I am in a total panic. (I know, can make this symptom worse)

Anyway, I read a story of a woman who was told she had GERD, only to find out she had a slow moving case of ALS.

My question is I've read different things on the swallowing issue. I've read where speech is usually affected first, or speech and swallowing parallel each other. I've also read where it is "oral" dysphagia (the actual chewing and first swallow) that is affected first.

My swallowing at that stage is fine, I don't choke or aspirate, it just feels like I swallowed a huge egg and it is stuck at the base of my neck.

In all of our research combined (which is a lot for this group), can anyone clarify bulbar symptoms? Anyone's nuero's remark on this ever?

Thank you all in advance. It's been a long time since I've been this scared.

Ginny
 
Your bodywide twitching is not ALS. You've got no weakness, and no other ALS symptoms. It's been going on for 20 months, and something noticeable would have shown up by now if it were a problem.

Is it possible that you have an unrelated case of bulbar ALS? Well, I suppose anything is possible. Is it likely? Not in the least! The very, very vast majority of people with symptoms like yours have some combination of GERD, anxiety, and other garden-variety ENT problems. There will only be about 1000 cases of bulbar-onset ALS diagnosed this year in the US, with most in older adults and most being clear-cut cases of bulbar onset. You heard of one case of someone having what they thought was GERD turn out to be slow-moving ALS. How many such cases are there every year? 5? 10? 20? Even if it's 100 (10% of bulbar cases), that's still odds of 1 in 3 million people in the US. When you consider your age, the odds get even better.

I hope the doctors figure out what's causing your swallowing issues. It's almost certainly not bulbar ALS, but it would be helpful to have the doctors diagnose it so it can be treated. Remember, too, that "lump in the throat" is one of the most common anxiety symptoms, so it may just be a matter of trying to ignore it and it'll go away.
 
Ginny,

I sent you a PM....but for all that are reading this I would like to point out that our GinniferLynne is a MARATHON RUNNER....;)!!!

I have had the same thing happen for years and at one point quite a few years ago I was convinced it was a tumor....it wasn't...nor was it a boiled egg stuck in my throat it was just stress or anxiety.

If you had Bulbar symptoms you would be drooling like a St. Bernard and have a shrunken tounge and whenever you drank water it would drain out of your mouth.....you would sound like your were drunk and friends and family would ask if you had been drinking too much.

You, Miss Marathon Runner, are going to be OK.

Cheers!

Paul
 
Ginny, Sx low down in the oesophagus as you have is not linked to ***. I googled this months ago because I had the same thing. It is the initial swallowing Sx that is connected. You also know that there would be other signs if it were bulbar. You have had the lump in the throat thing for ages, if it were due to bulbar, you would have much more marked Sx.

I reckon this is GORD or how you call it GERD, I am certain.

And don't be too quick to eleiminate Globus Hystericus, caused by anxiety which you are now also experiencing.

And finally, on a PNH website, I found it quite clearly stated that a lump in the throat sensation is a definite Sx of BFS/ BCFS

Now stop angsting!

Diego4Life
 
Ok...Im going to post this and go to bed and leave it alone.....


"Globus is the term given to the sensation of a lump in the throat causing difficulty with swallowing when there is no physical cause. One can't, of course, know there is no physical cause unless it's been excluded.
Globus hystericus is a Freudian diagnosis. It is used today to describe far more than neurosis. Those that follow a URI are due to patient awareness of their epiglottis and symptoms dissipate after examination to R/O cancer. Explanation is all that is required. Many describe this as a lump in the throat.
The most common cause is gastroesophageal reflux disease (GERD)"

"GERD is treated by antacids, bland diet, small evening meals and elevation of the head of the bed, (not with pillows, but rather by placing six inch blocks under the head bed posts) OR the above plus gastric acid suppression. While the suppressors are expensive, failure to make a diagnosis is also expensive (additional visits and tests). Treating with GERD precautions plus a 30 day trial of h.s. gastric suppression is often worthwhile."


There you go Ginny....jack the head of your bed up and go to sleep and no more mexican food before bedtime.

Hope this helps.

Paul
 
Hi Ginny - Sorry to hear about your scare. :( You do not have bulbar onset you know what. I have a suggestion—every time you start to panic, chug a beer down. If you can do that, you're fine. It's more fun than strength testing.

Cheers,
-Bill

P.S. Max says hello.
 
I have had similar symptoms to yours, including globus sensation (the egg in throat) for over 8 years. Mine is definitely related to reflux/esophagus issues. Last month, I had an esophageal manometry test done (very uncomfortable diagnostic, but, oh well..), and it showed that I have "nutcracker esophagus," or an esophagus that is much stronger than normal. This is linked in the GERD and a whole bunch of weird body sensations, chest pain, and anxiety (it both causes it and responds to anxiety).

No *** here... The manometry test confirmed normal motility all the way through the throat system.

-Dave
 
Globus senation is very coomon in people with BFS because it is also common in people with anxiety- lump in the throat feeling is almost always physcosuemadic-sp. That is a FACT.
 
HI all,

Thanks for the kind, thoughtful replies. I do appreciate it.

I HOPE you are all right. I would love to be wrong about this.

At first my doctor thought it was the globus sensation, but became more concerned when I told him that sometimes I have severe restricting pain in that area - even when I'm not swallowing. He seems concerned about esophageal strictures/web rings (I don't even want to know what causes them - I'm not going to even google it)

Anyway, there is nothing I can do about it at this point. I can TRY not to worry, but of course, that is not my nature (Oh how I wish it were)

I'll be glad when this is all over with. I need an answer one way or another.

You are all wonderful with your support, as always.

Ginny

PS - HI MAX!!!!
 
No need to be scared about stricures or rings in the esophagus--they are not sinister although certainly inconvenient and sometimes very painful--much like benign twitching. Getting scoped for reflux and its potential damage is a good thing! Some people have silent reflux causing severe damage only found late in life. The key is to prevent damage to the esophagus called "Barrett's", or to the larynx. Even Barretts is only a risk factor for cancer, not a fatal diagnosis, and this can be periodically checked up every couple of years. Most of the esophagus things have good prognoses--I know, as I've been there.

The esophagus is wired into the same pain circuits as your heart and upper vital organs, so when it has pain, it causes almost instant anxiety. The first thing most sufferers usually get is a cardiac workup, analogous to the EMG a BFSer gets.

The steps usually are:
o Look for damage and strictures
o Treat strictures if there by dilitation (stretching)
o Stop the GERD using PPI medication (or try). Surgery only for bad cases that don't resolve
o Get some lifestyle change advice (head of bed raised, meal schedule versus exercise, sleep, etc.)
o If Barretts is observed, check up every couple of years for any cancer

Nothing you've described so far is unusual for esophageal/GERD stuff. Once your esophagus is PO'ed, it takes a long time to settle down. When my esophagus is fine, I rarely twitch. When it is active, I twitch a lot.
 
Thank you bluestarman!

What a wonderful source of information you are.

You are correct. It is a good thing my GP wants to check this out considering that as soon as I go off Prevacid, my heartburn returns with a vengence!

Thanks again!

Ginny
 
As a GERD sufferer myself I have often felt this lump-in-the-throat feeling. I had it for years, before the internet, and I didn't even realize that it was caused by reflux. Once I got the acid under control, the lump feeling went away. At first it would come and go, but I haven't felt it for quite awhile now. It can reek havoc on the vocal cords as well, and as bluestarman related, it can be silent. In other words, you don't feel the reflux but it is there. Just listen to the husky voice some people have; reflux has completely trashed some peoples voices and they don't even realize that is the reason. Even a minute change in the soft tissue can be enormous in feeling.

Unfortunately, BFS has made us too aware of possibilities that would be off the radar for most people. There just doesn't seem to be a way to shake the ALS memory from our first traumatic days, when the twitching began. This is why we must trust in the life that we feel deep inside, and pull on that resource when "ugly prospects" raise their heads. Our mind is like a TV screen, constantly flitting from this to that. It is rare that it is in a state of stasis, perhaps, as long as we live, it never is. The spirit however is powerful, and once it is allowed to dictate our life, rather than our busy brain, we can skip over these bumps without too much effort.

I have told you this before, but there is an energy in your postings that is infectious. You are also an astute observer, and not a few times you proffered advice that has hit the mark. When you read MissyJ's post above, or perhaps below now, did you not think that there was no way on God's green earth that she had anything more than BFS? I felt this way when I read your post. I think that perhaps your nasty accident has left you feeling a little low, and that you should take this into consideration as well. As a vet, I am sure you know all too well that overcoming a trauma physically is not the same as overcoming it emotionally. Be gentle with yourself, don't expect too much of yourself, and really take the time that you need to completely heal. Don't forget, we are counting on you!

Cheers,
Basso
 
Ginny,

Totally hold the fort and be at TOTAL peace. You do not have als. Here is how I know:

You have been examined by a neuro and, had you had als, you would have shown additional symptoms. You know them already so I won't go into it. You could not have a hidden case of als for 20 months. I think that's just crazy to imagine. I have read numerous cases of bulbar onset and your symptoms are nothing like those cases.

I also want to tell you that I was having the exact same thing happen to me when all of this started. One night when I laid down in bed I heard this weird noise come from my throat. It scared the heck out of me. I was having the egg thing, tightness, etc. I relate strongly to your story.

I will especially pray for you tonight. You are fine and I have no doubt about that.

MarkS
 
Being a GERD sufferer for a long time, I'd also insist your GP or GI doc do a 24 hour pH study to determine the extent and timing of your reflux, and an esphageal manometry to test the effectiveness of your esophagus and sphincter to your stomach. The former can now be done with implantable, poopable capsules and a wireless setup (the "Bravo" system). The latter diagnostic is very uncomfortable, but extremely useful IMHO.

I wish I had had these diagnostics done earlier, as they found some specifics that finally made the condition (for me) easier to treat.

Most if the time, the docs just want to throw drugs at the problem and hope it goes away (which many times it will), and not determine the mechanics behind it which may suggest better treatment strategies.

The manometry will also rule out any rather rare conditions contributing esophageal malfunction like scleroderma. Again, not fatal conditions, but things requiring specific treatment strategies with good outcomes if they are caught early on.
 
"A (wo)man who is their own doctor has a fool for a patient." Not sure who said that, but it is true.

I was originally fixated on ALS when I started twitching and accepted I was going to croak well before my printed expiration date, but that lasted about 3 weeks until I came to the realization that I'd be really bad off (especially by now), and have clinical weakness, which I never have had. Then, I determined I was an MS sufferer, but an MRI and again, no weakness or persistent numbness, closed the door on that fate. I had a great Neuro (a guy by the name of Dr. Risk, which is a name I mused at initially), although I never received an EMG as he said I didn't have enough symptoms to justify the discomfort of one unless I insisted. I have a new respect for the power of the mind and anxiety and what they can do when awry, though! My Psych (I saw one for awhile) said that the two biggest pretenders in heathcare are anxiety and migraine headaches. I may actually have non-typical migraines as well, but I don't dwell on that anymore as I've got to get on with living. My faith in God has grown and my priorities have changed much like guys as Mr. Basso Profundo note. BFS will be a perverse sort of good thing in the end, for me, although I KNOW all the unsettling things that BFS can bring. I have had all the symptoms everyone else notes, with some still around. I have good days and bad days.

Personally, I only search emedicine.com now for any health concerns I have. The articles there are straightforward as to symptoms, diagnostics used, and prognoses. The information has been reassuring, and has helped me steer through what to ask for or expect.

The most effective med for me for the breakthrough hearburn (I also take a PPI) was Gaviscon. No lie. Got that tip from a pharmacist friend of mine. You can get generic Gaviscon for really cheap at wonderlabs.com. Gaviscon contains a medium amount of magnesium too, which is reputed to help BFS. Gaviscon only works when you are upright, BTW. Makes a raft of calming suds on top of your stomach contents so if anything refluxes up, it is the antacid first. For sleeping, there is a cheap prescription drug called sucralfate (Carafate) that is an old-line ulcer drug, which coats anything stomach acid irritates with a protective coating. I have also found it helpful.

Second most helpful drug for me overall? Good ol' Xanax at low doses. .25 mg is effective for me, works on my twitching, stomach, anxiety, and sleep. Xanax would be my wonder drug of all time if it was not habit-forming for some people and has some other bad properties(tolerance). I respected Xanax tremendously, and also learned to appreciate it at arm's length.

My personal finding after diagnostics? GERD, stress, and esophageal cramping (and perhaps a bit of carpal tunnel from wrist abuse during a home remodeling) led to being prescribed an SSRI (Lexapro), which sent my esophagus pain into high gear, and my twitching from nothing into the stratosphere. This medication course ended in May, and I'm just starting to feel better.

I happen to have a very tense overreactive esophagus (Nutcracker), paradoxically leading to GERD symptoms. If this may be you (or if you want to try out the proposition without visiting your doc), take peppermint oil tablets (Heather's Tummy Tamers is a brand you can find on the net) as directed on the bottle. Or, mix up strong peppermint tea using the dried herb from a health food store. If your heartburn gets better over a couple days, you likely have esophageal or stomach spasms behind it all. If it gets worse, you may have run of the mill GERD due to a lax stomach sphincter (called an LES). Lifestyle mods definitely help with the latter and let you do something actively to combat the disease. During this test, have Gaviscon at hand, as peppermint can cause normal heartburn temporarily to go into overdrive.
 

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