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DonS

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I'm sure you get this types of health anxious questions a million times a week, so I apologize in advance. However my symptoms are more concerning than basic muscle twitches.

It started maybe 6 month ago with me clearing my throat, especially during eating. I also began to experience throat pain on my left side when speaking for extended periods of time. Gradually the throat clearing has progressed and now I also often cough excessively in addition to clearing my throat and while eating or even drinking liquids. To be clear - this is during, not after I finish eating.

So those are my two symptoms, coughing/throat clearing during eating and drinking. And getting neck pain on my left side starting at my adam's apple that runs down into my chest directly below my collar bone on the left side.

I have no apparent problems with my speaking. No slurred speech, nasally speech, or problems with long sentences or pronouncing words.

I recently went to a neurologist. I wasn't too impressed with him. Even though I was clear my concern was Bulbar onset ALS he did all these test to check the functionality of my limbs. When he did look at my mouth is was just very briefly I don't feel he did a very thorough job.

From the things I've read online, coughing during eating and drinking is something to be concerned about. I've now been to GPs, ENTs, pulmonologists, cardiologists, gastroenterologist and now a neurologist. So far they've all come back with absolutely zero remarkable findings. Test performed: esophagram, endoscopy, chest CT, endoscopic exams of throat, blood work multiple times, EKG, echocardiogram...

I am now scheduled to go for a modified barium swallow to further evaluate my swallowing... I'm also working to get a neck CT.

My questions are the following.

I've read conflicting accounts of pain and it's relationship to ALS. Is getting neck/throat pain that runs down into the left side of my chest after speaking for an extended duration something that's even possibile with a diagnosis of ALS? At first I thought this would exclude ALS but then I realized that if I'm experiencing muscle cramping in my neck this could irritate nerves in my neck which could cause pain. Is this a reasonable possibility or would this be an unheard symptom of with Bulbar ALS?

Second question. Since my problems are all swallowing related but don't at all involve my speech... Is it possible to have swallowing problems before having speaking problems? It seems like, based on most of the literature I've read, that speech problems come first with Bulbar ALS and then the swallowing problems come later.Can the swallowing problems ever come first?

So I think covers it. I'm seriously concerned by my swallowing problems and don't see a lot of other possibilities for what can be wrong with me. At the same time, my symptoms don't seem to perfectly match up with Bulbar ALS. My speech is normal and I'm experience some fairly intense neck pain after speaking for extended periods of time.

Any comments or insights are truly appreciated. I know there's something wrong with me, I just don't know what it is yet and it's obvious stressing me out quite a bit.

Thank you and god bless,

Don Spanton
 
Sorry, I forgot to mention my specifics:

I'm about to turn 37 years old. I use to do amphetamines, smoke etc but have quite all of those bad things since 2012. I've been diagnosed with a mild hiatal hernai and minor reflux. And I've had left leg sciatica for years. I think that about covers it. No major medical issues other than a sinus surgery a few years ago.
 
And this is the logic I've been trying to use to keep myself calm and wait for answers:

Odds of getting ALS: 1/50,000
Percentage of ALS diagnosed under 38: .03%
Percentage of ALS that is Bulbar: 25%

50,000/.03/.25= 6,666,666.75

So the odds of someone my age being diagnoses with bulbar ALS is about 1 in 6.66 million. And considering that the first symptom is not speech pathology (the most common symptom at onset) and I also have accompanying pain in my neck, this could put the odds well over 1 in 8 million I'd say...

And yet I still can't stop worrying about this. Maybe because I haven't heard of any other good explanations for why I could be coughing during when I'm eating and drinking.

Jeez, I'm a freaking train wreck. Honestly I hide all of this stress and anxiety from my girlfriend and people close to me. I'm ashamed that my mind works this way. But yet there's a part of me that really fears there's something serious wrong.
 
Don,
What you describe sounds like a localized rather than systemic phenomenon.

I would see an ENT.

Best,
Laurie
 
With a hiatus hernia I would see your ENT or a gastro and discuss as this condition can cause the issues you are reporting. Since you know you have this issue, the chances of it being due to the hernia are pretty high and would be the first thing to pursue I would think.
 
Thank you taking the time to reply.

I have been to both an ENT and a gastro.

I haven't had sinus issues for while (so haven't seen the ENT lately) but I'll be going him on Thursday to ask for a neck CT. My throat has been evaluated multiple times and they found nothing.

And I am actively seeing a gastro. They already did an esophagram and the endoscopy. Esophagram was fine, the endoscopy came back with minor findings. Doc is putting me on a different PPI to see if that helps. But he's also sending me for this modified barium swallow. I'm not stupid. I know that's to check for swallowing problems that can be neurological in nature.

I just scared. Every time I eat or drink I either cough or clear my throat. And none of the tests are revealing tumors or abnormalities.

I know said this sounds localized. And I agree. But isn't that how ALS starts? Localized to one area before it spreads? I mean I turn 37 tomorrow, the odds are just so small of this being bulbar ALS but what else could it be?
 
Don, did you get that swallow test yet? Let us know the details of those results.

The good news is that your doctors and the three of us with experience in ALS don't think ALS is the way to go.

You said you don't see a lot of other possibilities for what can be wrong and you asked what else could it be? Allow me to comment on these. First, of course, you and I are no where near as well qualified as your doctors. If you don't trust one, replace her.

The problem with doctors is that they don't/won't/can't tell you what they are thinking. But they are apparently not worried about ALS.

That said, I can't say if you should be worried about ALS or not, but I can say that your description is unlike any ALS case I've ever heard of. As I read your posts, ALS just never jumped out at me.
 
Thanks for your response Mike. It means a lot to me.

I haven't received the modified barium swallow yet. They are suppose to call me today to confirm the appointment time. Apparently this is not a common test and I've been getting a bit of a run around with setting it up. I did previously have an esophagram which, from what I've read, is a type of barium swallow. I'm not exactly sure what the differences are... something about motility evaluation..

To be honest, my doctors haven't stated one way or the other if they believe I have ALS. And I respect that. I like straight shooters who will only tell me what they know definitively. Of course I'm incredibly anxious right now because of what's happening but I'm not a nutter on here posting because my left eye lid is twitching. My degree was in molecular biology and I now own one of the top dog walking service in nyc. I have a strong mind and pride myself on my rationality.

"You said you don't see a lot of other possibilities for what can be wrong and you asked what else could it be? Allow me to comment on these. First, of course, you and I are no where near as well qualified as your doctors. If you don't trust one, replace her."

I totally agree with you that I'm not a specialist. And I'll also admit that I've just started exploring the neuro route as my first thoughts were that this was something related to a digestive disorder. So the neurologist I visited was just a guy on zocdoc who had immediate availability. As I know you know, ALS is not a very common disease (the bulbar variety even less so) so even many neurologists might not know all of the signs to look for. And further, a basic physical exam is not a substitute for getting an EMG which I've discerned is the gold standard for coming to a conclusive diagnosis (or at least as close to conclusive as you can get with something like ALS).

So right now I'm in the "pushing for lots of testing" mode. I don't think the doctors I've seen are worried or unworried. They're just doctors with lots of patients, regulations and health insurance rules to busy themselves with. If it turned out I did have bulbar ALS I'm sure it'd be a surprising curiosity for them that they'd remember for a long time to come...

"That said, I can't say if you should be worried about ALS or not, but I can say that your description is unlike any ALS case I've ever heard of. As I read your posts, ALS just never jumped out at me."

I appreciate your honesty Mike. Your last paragraph gave me all of the information I was hoping to, at least for now, attain from these forums. First, you didn't tell me to scram and stop worrying about ALS as I've observed you do countless times with the health nutters, hundreds of whom swarm all over this forum every month. This tells me you recognize that my swallowing problem could (maybe, potentially, etc) be something suspicious - at the very least, something in need of thorough evaluation.

Yet you also stated that the symptoms I'm describing are unlike any you've ever heard of for someone diagnosed with ALS. This gives me some degree of hope, considering you are clearly an individual with lots of experience and knowledge regarding ALS. Based on my own investigation of the internet and this forum, this has been my conclusion as well. I haven't read of a single individual with bulbar onset ALS that initially had the symptoms I'm having. Of course ALS expresses itself in unique ways with no two individuals exactly alike, so having uncommon symptoms at onset doesn't exclude it as a possibility... I need an EMG. Everything else at this point is mental masturbation, pardon my french.

Other random thoughts on ALS... (not necessarily germane to my thread). I read a statistic that ALS is twice as prevalent in military vets, reasons unknown. I was pondering if there could be a relationship between PTSD (with the extreme physical/psychological stress that accompanies such a state) and ALS. Perhaps extreme stress is a trigger which sets off ALS in certain individuals with yet to be identified genetic markers. I was thinking about this because for most of my 20s I was not so kind to my body with smoking and abusing adderall. Maybe all of that stress finally caught up to me.

Ah such morbid thoughts, I never thought I'd find myself hoping for a diagnosis of cancer... The tests I'll push for now are (1) modified barium swallow (2) neck CT or MRI (3) thyroid ultra sound (thyroid would be best case scenario IMO...

Based on how those go I then push for the EMG.

Thanks again to everyone for their time. All posts or insights you can provide me with are very much appreciated.

If and when I do find out conclusively what's wrong with me I'll be sure to make a follow up post. If it happened to be ALS it'd be my final post. I have no wife, no children, nothing holding me here. I'd maximize my financial liquidity and set off to see as much of this world as I can while I still have the time. And when I sense I'm close to losing my autonomy I'd conclude it on my terms.

Take care everyone,

Don Spanton
 
testing to see if my messages will post through
 
Okay, cool I'm not sure why but previously I was having difficulties getting my messages to post (which was quite frustrating when I put considerable time in to one of them).

Sooo... I was able to secure an appointment for the modified barium swallow study on 4/26, which is disappointing to say the least. They told me that they are booked solid and also that it would take at least a week's time if not more for the insurance approval.

What I find myself wondering is if, in the meantime, I should try getting an EMG done before the MBS?

I mean look, I know I have a swallowing problem. Most food and thin liquids, coughing, clearing of throat, etc. What's the modified barium swallow going to tell me other than a bunch of technical details... penetration vs aspiration, measures of tongue force, swallowing reflex... maybe they'll provide some type of protocol for swallowing techniques to minimize chances of aspiration or exercises to strengthen my swallowing. Then they'll most likely refuse to comment on the ultimate cause of my physical ailment and refer me on to a neurologist for diagnostic testing (such as EMGs).

So why should I play this passive waiting game and not just get the party started with finding a neuro who will zap me with the EMG to test for bulbar. I know have swallowing problems and I've also already ruled out that they're not osophageal in nature (osophagram, endoscopy, etc etc). I've run down a massive check list of every possible muscular and neuro degenative disorder that exists in medical text books. Even some rare stuff like mitochondrial disorders. None of them match, not even close. The only one I can find that has no exclusionary symptoms is bulbar onset ALS. MY theory is that this instance of bulbar ALS has started in the epiglottis, hence as of yet me not having any speech pathology. Since starting on a regiment of valium the neck pain is completely gone (which would hint at localized muscle spasms in my neck, again a potential symptom of bulbar ALS).

The swallow study will almost certainly tell me nothing I don't already know other than the technical details of the swallowing problem. The EMG, well, that will tell me if I need to move forward with my other plans for selling my business and world travel. It will also tell me if I need to immediately start taking Riluzole, which from what I've read is only a modestly effective treatment, but the best results were with delaying the progression of bulbar ALS. In other words, the longer I delay in getting a bulbar ALS diagnosis, the more time I might be costing myself as a result of not slowing down the progression with the riluzole..

Does anyone have any thoughts on this? Should I just get the EMG asap and view the swallowing study as kind of a nice informational bonus I can indulge in in a few weeks?

Best,
Don
 
Don, with respect, rather than posting these long messages here you are probably better trying another doctor you trust. If you can't wait a couple of weeks, then make appointments if that helps you.

The barium swallow will tell them a lot.

Without test results we can't really comment any further than we already have.

You have a swallow issue, but no speech issue. You have neck pain and hiatus hernia.

For sure, keep working with doctors and let us know the results.
 
Hi Affected,

Thanks for responding. You're right, my posts are rather long. It's always been the way my mind works with long rambling trains of thought.

I have friends and family but I've been keeping all of this from them. I guess I just need to let this out somewhere. Maybe it's selfish that I'm doing it here.

I will say that I wouldn't be nearly as stressed if I could find other possibilities for why I can't swallow liquids without needing to repeatedly clear my throat. Or why I'll cough at least a few times while I'm eating a meal. I've already been to a gastro and he did all kinds of tests to rule out the reflux and the HH as being the ultimate cause of this. If issues with the esophagus were still on the table I wouldn't be so worked up about things. So then when I go online what do I find that's left? Oropharyngeal dysphagia. That's what's left and there's no good diagnoses when it's been narrowed down to that.

Then I start thinking: which symptoms are real, which are psychosomatic and anxiety generated. Like is the swallowing and clearing of throat getting worse because I'm thinking about it or because it really is progressing? Are the twitches I've now started to notice in my calves and thighs for the past week some degree of progression or just BFS from anxiety?

I want to know things like not just how long you have to live if you had bulbar, but how long could you function in a normal way (like for example traveling to all the places in the world I've always wanted to visit). I want to know if bulbar can quickly spread to limb or respiratory function. I want to know if there are layperson ways for me to identify if and when functionality is close to epic fail (so I won't need to stay in close proximity to a doctor to monitor symptoms).

And honestly, I don't really care or have much respect for many doctors. Especially GPs who I view as essentially glorified drug pushers with not much more specific knowledge than can be acquired with a basic google search. On the other hand, quality specialists I do respect and value. With most illnesses my policy would be to find a good one and stick with them as I dealt with and hopefully cured my condition. But with something like ALS I just don't see the point. Going back and forth to hospitals for strength tests and progress reports. There's no cure, there's no treatments. I get back a dirty EMG, maybe I'd go for a second one to confirm. And after that I'm straight on a plane to Bangkok.

But I will say, I have asked questions that are interwoven into my posts. I'm just guessing most people really don't have answers for me. Because there really aren't any definitive answers with a disease like this. Some people with bulbar get leg fasciculations, some don't. Some with bulbar have speech problems first, some don't. Some can last over five years, some only one. Some have pain from muscle cramping, some don't. There's no rhyme or reason to any of it. I doubt that doctors will be able to provide me with answers that are much better than the good people of these forums could.

I gotta go find a neuro that will do the EMG for me. That's it. There's nothing else at this point.

I just need to know if I have this thing so I can pull the trigger on my last great adventure.

And that's it's. I promise no more until after I get the results of an EMG. I've been more than a little selfish with everyone times.

Take care,
Don
 
Don, I've been reviewing everything and moving closer to the opinion that this isn't ALS. But the reason I'm writing now is to give specific advice and general advice.

Specifically, in my own uneducated opinion, the swallow study is as important as the EMG. The EMG doesn't show all the information needed to diagnose ALS.

You're obviously an exceptionally smart guy with a lot of can-do initiative and leadership abilities. I suspect that you're rarely wrong and perhaps that has given you confidence. Your words indicate you trust yourself more than you trust your doctors. That might be leading you astray.

You seem to be directing your own health investigation, as you determine which tests you want and which direction to go. I advise finding a GP medical doctor you trust, and let them direct the health investigation. They're trained to figure out which specialists to use. I'm sure you'll agree that a GP doctor has about a million times better knowledge and judgment about medicine than you or me. (Let me revise this in a minute.)

So that's my suggestion. Try to let a doctor run this show.

(By the way, none of your posts in this thread were ever deleted. We have been having some server problems from time to time, so maybe you lost a post that way.)
 
I will just ditto Mike on this one.

My husband had bulbar onset ALS, and I work voluntarily with my MND association running support groups and have had close contact with many PALS, most of them having bulbar issues at some point, so I know it pretty well.

The barium swallow is an incredible tool with bulbar issues. There are so many causes for dysphagia, and the MBS will help pinpoint the direction to pursue next, it is far more than just anther test.

Find a doctor to trust and let them do what they need as Mike says.

Most of our PALS won't cope with reading your long posts, so you are only likely to be answered by a very few.
 
Don, not bragging, but my wife was a family practice physician for 20 years. Together, we dealt with ALS until she died just 9 months after her first symptom.

First, there are nearly NO true "general practitioners" in the US. That's a person who graduated med school and hung up a shingle. That rarely happens in the 21st century.

Instead, the people we call GPs today are typically grads of med school, who then graduated from competitive residencies, who then sat for several days of state boards before going out on their own. Then, to maintain board certification, they must complete additional education every year to stay up to date. Also, they regularly meet with other docs and other specialties in weekly or monthly cross-education lunches.

I used to think medicine was a fuzzy science until I discovered that my wife could cure me perfectly, before I even knew I was ill. The cases she handled at all hours of the day and night were often pretty tricky, requiring a lot of knowledge and experience.

ADDED: The problem in most medicine is that almost all the data comes verbally from the patient, who knows nothing of either the body or medicine. So most medicine is pretty much led astray by the ignorance of the patients!

But I noticed that doctors don't communicate well at all. The fact is, they have 1000 thoughts in their minds when they see you, but for many reasons, they won't tell a patient hardly anything at all. Most all of us couldn't possibly understand the science anyway.

In short, if you don't trust your GP, get another one. But don't let your self-confidence lead you astray.
 
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