Dysphagia as first symptom ?

[dysphagia9]

Warning, long story!

32 years old male, apparently,hopefully, in good health!

November 2013 all of a sudden I had issues swallowing, felt like my throat was really small and had to chew forever in order not to choke. I went to an ENT and she said I had chronic tonsilitis and to take them out. Issue went away after 2-3 weeks so I never followed up on it.

November 2014, issue came back but it sort of got better after 2 weeks except I was left with feeling a lump on the right side of my throat. ENT again said it was tonsilitis and to prep for removal. I didn't want to do that so I went for a second opinion. They wanted more tests done since my tonsils didn't appear as being infected or swollen. So since November 2014 I went through:

- blood analysis, including thyroid
- an MRI of the head and neck, all good
- a few ultrasounds of the neck/collarbone area, all good
- endoscopy, all good
- modified barium swallow, all good
- 2 months on PPIs, no improvement

During this time the lump sensation stayed there, clearly on my right side. I never choked on liquids or solids, I just had to chew a lot until the food became like paste before I could initiate the swallow. Then in May a filling came out and the dentist discovered a chronic infection, but on the left side. They fixed that and *I think* my swallowing improved somewhat but I'm not totally positive on that. In any case, it still takes me about 30 minutes to finish a 10 minute lunch.

I don't have any change in speech but that's kind of hard to gauge since I've stuttered/had issues with speaking since I was 7. It also gets much worse when I have anxiety, but if I concentrate enough I am comprehensible. In any case, nobody told me that it's worse than before.

I've kept training during this time but less intense since I couldn't feed myself properly and was very anxious. I've lost maybe 15-20% of my peak strength in various lifts & endurance. ( ex 265lbs back squat vs 300lbs ).

Since no test discovered anything, I was sure I had globus hystericus but then another symptom appeared. The right side of my face felt 'heavy' but nothing apparent in the mirror. No drooping, no difference to the left side. I went to see a neurologist and she ran some tests for reflexes on me, had me look up, down, sideways and said that all was normal. She then had me take an EMG and some other test where they passed electricity through some elctrodes. Both came back normal!

EMG was done in my right quad, right upper thigh, between my right thumb/index finger and under my chin. She said it's quite likely not ALS and to start taking some Magnesium-B6/B12 pills and to run some other blood tests for some antibodies. Now, since AFTER the EMG and since I started taking the Magnesium, I've started getting twitching all over my body. No specific spot, just all over. Not sure if magnesium can do that, some forums on the Internet say it can.

I've read a lot of threads and if there are swallowing issues, it usually means bulbar in case it's ALS. Can that still be the case despite no apparent progression in 9 months and a clean EMG ? Sorry for the long post, but the past 9 months have been really debilitating.

 

[affected]

Thanks for all the detail you posted.

My husband had bulbar onset ALS so I have a fair bit of knowledge about just how it starts, even really early on before most people realise what is happening.

I've read your post really carefully and notice that there is nothing you describe that matches up with bulbar issues. This is great news for you.

It also happens to match up with what the neurologist has told you and all the tests are telling you. I know it doesn't tell you what is happening. If it were true swallowing issues that cause you to take 30 minutes to eat lunch, they would show up on a barium swallow. We had two of them done during my husband illness, they are incredibly informative.

To be honest now, if you had been experiencing ALS dysphagia since 2013, you would most likely be dead by now. That's the brutal truth of ALS.

I hope I've helped put your fears to rest. If not, please get back to your doctor quickly and explain how anxious you are so that you can receive medical help for this. Anxiety is a very real medical condition that can be treated well.

All the best

 

[Atsugi]

Not ALS.

In bulbar ALS, the tongue lays limp and useless, paralyzed, causing you to choke on liquids and slur your speech very badly.

The EMG cleared you of ALS.

 

[dysphagia9]

Thank you. I will be on my way now.

I do have a prescription for Lorazepam, 1mg which does help with the anxiety when it hits the worst. Before each of the tests I took I would be a train-wreck and it was the only way to calm me down.

Best of luck to all of you

 

[dysphagia9]

Sorry to bump up this thread, but I had a few more questions for 'affected' and possibly anyone else that could chime in. I'm only posting because my MG tests also came back negative and I get a weird sensation in my right arm/leg ; it's hard to remove this disease from my head

- In Bulbar onset, do you get a lump feeling in the throat, possibly just on one side ?
- How soon/fast do you have trouble with liquids ?
- How soon/fast does tongue twitching start ?

Is it possible to have issues on one side of the throat for 9 months but no trouble with liquids / tongue twitching ?

 

[Atsugi]

DYS: You stated your problem: it's hard to remove this disease from your head.
You won't succeed until you stop focusing on ALS.

If you had bulbar ALS for nine months, you would have a paralyzed tongue laying limp and useless in your month and you would be severely disabled, part of the way to death!

I recommend you pay attention to your doctors, or at least reread Affected's post.

 

[affected]

to answer your specific questions
- In Bulbar onset, do you get a lump feeling in the throat, possibly just on one side ?
No
- How soon/fast do you have trouble with liquids ?
Rather than 'feel' anything you simply have trouble particularly with liquids and begin choking
- How soon/fast does tongue twitching start ?
it varies - twitching is not the issue
Is it possible to have issues on one side of the throat for 9 months but no trouble with liquids / tongue twitching ?
Yes it is possible - but it won't be caused by ALS

I think we've really answered your questions completely now. If you have had bulbar ALS coming on for 9 months, even if a slow progression you would KNOW without a doubt and so would your doctor.

All the best to you, it really is nothing like ALS no matter how you try to twist it to fit.

 

[dysphagia9]

to answer your specific questions
- In Bulbar onset, do you get a lump feeling in the throat, possibly just on one side ?
No
- How soon/fast do you have trouble with liquids ?
Rather than 'feel' anything you simply have trouble particularly with liquids and begin choking
- How soon/fast does tongue twitching start ?
it varies - twitching is not the issue
Is it possible to have issues on one side of the throat for 9 months but no trouble with liquids / tongue twitching ?
Yes it is possible - but it won't be caused by ALS

I think we've really answered your questions completely now. If you have had bulbar ALS coming on for 9 months, even if a slow progression you would KNOW without a doubt and so would your doctor.

All the best to you, it really is nothing like ALS no matter how you try to twist it to fit.

Tillie

Thank you Tillie, this is indeed a bit reassuring! I will see my neurologist again on Monday to check up on some other things, but assuming it's not ALS, do you think that something like Progressive/Pseudo bulbar palsy cause these symptoms and not cause issues with speech / liquids for this long ?

Even as I wrote the phrase above, I realized I'm trying to fit my symptoms into this disease, not sure why. Good news is that I did see a psychiatrist yesterday and they started me on 10mg Paxil/day to alleviate the anxiety.

 

[Atsugi]

I wish we could help with your diagnosis, but we can't. All we know is ALS.

Let the Paxil have time to work. You might want to see a psychiatrist that does Cognitive Therapy. I recommend a psychiatrist instead of a psychologist because psychiatrists are MD's and can tell which problems are physical and which were mental.

 

[dysphagia9]

Thank you again Atsugi. I would like to answer my own question and possibly offer some insights to others that may struggle to differentiate between these illnesses.

PBP (Progressive Bulbar Palsy) is nothing more than the early stage of bulbar onset amyotrophic lateral sclerosis (ALS). According to the revised El Escoral criteria. PBP could be called “possible ALS with bulbar onset”. This is an Lower Motor Neuron (LMN) disease. ( references: ISNO - Neuromuscular Info - Disorders and diagnostics - Progressive Bulbar Palsy , https://en.wikipedia.org/wiki/Progressive_bulbar_palsy ). This disease CAN be identified with an EMG.

PseudoBulbar Palsy on the other hand is an Upper Motor Neuron ( UMN ) disease and can't be identified with an EMG. However, patients having PseudoBulbar Palsy will have other distinct characteristics that make diagnostic possible: Dysarthria ( slow, slurred speech ), dysphagia, brisk jaw jerk reflex, labile affect ( sudden outbursts of crying / laughter ).

Here's a sample of dysarthria:
Spactic dysarthria 1/5 - YouTube

Jaw jerk:
jaw jerk - YouTube

Now that I am informed ( and medicated , I definitely feel a lot calmer. Thanks again for your input.

 

[affected]

Honey you really have to stop now.

My husband died from bulbar onset ALS so I know what I'm talking about.
We have answered you and you don't have ALS which means you don't have PBP.

We need our energy for others now and I truly wish you all the very best. Being here is not healthy for you at all and neither is asking questions once you had the answer no.