Swallowing problems get worse...

[Antologia]

I wanted to post this in my thread from november, but it’s closed so here’s a new one. The ENT did a swallowing test and couldn’t diagnose me. He send me back to the neuro. There is a long waitinglist, I’m waiting fot an appointment. In the meantime, things get worse. I choke almost ervery time I try to swallow. Mostly in things like potato, pasta, pizza, bread and rice. I avoid eating them. The logopedist gave me some tips like chin to breast, eating alone and that helps a bit. The ENT also mentioned ALS. He said: it could be, but it would be strange because the tests didn’t point to that 5 years ago when I had the EMG. So he doesn’t think it will be ALS as a first, but he couldn’t rule is out either. So now waiting for the neuro and I’m still very worries about the swallowing, because it confronts me all day, every day.

 

[ShiftKicker]

Hi there- I have linked the most pertinent of the threads you've posted here in the past for members to easily be able to access your posted health history. It helps to see the responses you've received in the past in order to provide better responses and make sure they aren't asking unnecessary questions if they've already been answered.

It's not clear if you have a specific question today or if you are just providing an update to what appears to be a very long search for answers from doctors.

My story so far, does this sound like ALS?
Is this tongue atrophy?
My story so far, does this sound like ALS?
Salivation
Pins & Needles
A few questions (again)
Could an EMG miss ALS?
EMG/twitching questions
Speaking: the s
Twitching for a year now and excess saliva
Questions (again) about swallowing and more
lost my sneeze reflex...
Back after 5 years... still worried

 

[Vincent]

You have to understand, people with ALS show abnormalities on EMGs long before they have symptoms. So with you having swallowing issues before getting a clean EMG, would lead me to believe that ALS is off the table. And yes it would show up on an EMG no matter where you were tested as the disease is body wide before you get weakness. Another route you may wish to pursue is looking at why you have spent 5 years trying to get diagnosed with a rare terminal disease. Anxiety can manifest itself physically. And hanging out here is not helpful to anxious people.
Vincent

 

[Antologia]

Thanks for that. I do not have any questions at this point, I was posting an update, because I had received some private messages and noticed that people want to know how it's going. I have an appointment with the neuro on the 20th of May I heard today, so won't be too long...

 

[Antologia]

Hi Vincent, thanks for your reply. I did not have swallowing issues before the EMG. It started with twitching bodywide, then a normal EMG. Had no symptoms at that point and after the neuro diagnosed me with BFS I got on with my life. However, the swallowing issues started 1 or 2 years after that. They got worse since summer 2018 and I went to see the doctor in januari 2019. He send me to the ENT, who did some tests and couldn't find a reason for my issues and send me back to the neuro now, to take a closer look. I do not spend 5 years trying to get diagnosed on a terminal disease! I got on with my life, got pregnant of my 4th child etc. But the swallowing problems are pretty bad now, my husband told me to see the doctor, because I choke almost every meal and eat very slow. I'm do hope they find a solution for my problem and I really really hope this is all stress or something... But I don't think so, because the ENT did see the problems when he did a FEES test (making a film when I eat). He just couldn't find a cause in his specialty.

 

[lgelb]

Antologia,

If your ENT documented swallowing problems without finding a cause in his specialty, you might ask when you see the neurologist if there is a possibility of slowly-progressing adult-onset muscular dystrophy or another primary muscle problem.

Best,
Laurie

 

[Antologia]

Thanks Laurie, I will keep that in mind when I see him on the 20th of May.

 

[Antologia]

My history:

2013 fasciculations
2014 Neuro and EMG, diagnosed BFS
2015 light swallowing problems, did nothing with that and went on with my life
2018 swallowing problems got worse. I eat very slow, about 1 hour if it is pasta, potato or bread. It feels like the swallowing reflex doesn't come. I don't have problems chewing, it's just that when my brain thinks: go swallow, the reflex doesn't come quickly and something goes wrong in coordination. Food gets down te wrong way, but I can get it out by the gag reflex. After eating chips or something I cough, because little parts go the wrong way, which I don't feel. I do not have slurred speach. I do have a horse voice, for 6 years or so.
2019 april I went to ENT because of the swallowing problems that really started to bother me. I had a FEES and the ENT sent me to a neuro. The appointment was yesterday, but I was called that it was postponed to July 15th... I'm working on that, because I don't want to wait so long.
Now: since this week I experience breathing problems. I can't shout, have to breath between words when I say a sentence. I don't have headaches or something. At night or as soon as I lie down, my throat becomes very very dry and I need to get water every 10 minutes because of that. The dry throat also wakes me up several times at night.

I'm scared... Does anyone recognize this pattern or symptoms in ALS?

I know this would be a very slow progression, or at least it was until now, because it looks like it's getting much quicker the last 6 months. But I also read about some slower forms of ALS or PSMA so you can't rule it out 100%. Can't find any other disease that had this pattern. I do not experience any problems in my arms or legs.

 

[Clearwater AL]

Antologia, Since 2013 you have started 8 or 9 Threads and countless replies. This Thread is about
to ramble onto a 2nd page.

No matter how hard you try to convince your brain you have ALS... the brain will not respond to
your obsession with ALS. I think you are trying to convince us. No one here has or will support
the consideration you have ALS without an EMG report and the summary/conclusion last page.

So, until then there isn't much purpose of you posting new symptoms or keep referring to old
ones that you feel are getting worse.

You've asked many questions and you have received replies from extremely ALS knowledgeable
members.

Until you can post the results of any possible future EMG....

 

[lgelb]

As you await your forthcoming appointments, I would focus on symptoms instead of any particular diagnosis. Mouth/throat sprays, a focus on hydration, moist foods (adding lots of sauce to the pasta, and dip to the chips, for example) and sugar-free cough drops could be fruitful. Sleep is also very important.

I agree there is no point to your posting again until you have more results.

 

[Antologia]

I’m sorry for bothering you. It’s a long wait untill July the 15th, my new appointment. And yes, I do try to eat things I do not have problems with, but the breathing problems and the swallowing problems scare me. They are trying to get me to another hospital with a shorter waitinglist, but I’m still waiting to hear if that is possible.

 

[Clearwater AL]

Once again I will repeat what I wrote to your previously.

Until you can post the report from an EMG (if the Neuro decides it is warranted) posting
any further is a waste of time.

No matter how hard you try to convince your brain you have ALS... the brain will not respond to
your obsession with ALS. I think you are trying to convince us. No one here has or will support
the consideration you have ALS without an EMG report and the summary/conclusion last page.

Once again...

"So, until then there isn't much purpose of you posting new symptoms or keep referring to old
ones that you feel are getting worse.

 

[Antologia]

Let me explain something to you. Als or any other mnd disease is difficult to diagnose. Sometimes it takes a few years before you get the diagnosis. You experience complaints all the time. You therefore feel anxious and alone. Certainly in the case of swallowing complaints and respiratory complaints. This is difficult to see for the outside world. Every meal feels like a struggle. I'm tired after dinner. There is a need to talk about this with people who experience or have experienced the same thing. Who do not (yet) have a diagnosis or do have been diagnosed. People who know how you feel.

I hoped to find that place here, but apparently you can only express your feelings if there is a diagnosis or an abnormal EMG. My EMG, taken in 2014, only arms and legs, was normal. At that time I only had fasciculations. I have not been in this forum for 5 years. There was no fear. Until the swallowing problems worsened. Until breathing problems occurred. Now there is fear again. Can you blame me? I have to wait for 7 weeks before the neuro can see me. Maybe a new EMG will follow. Then I "may" come back here again. If I have the results of that. Until then there is no place to express my feelings with people who have experienced this in the preliminary phase. Unfortunately. I think it would fit well here.

 

[codyclan]

Well, let me explain something to you, the people here are dying, caring for someone who is dying or dealing with grief from a loved one who has died. It is really not necessary and is insulting for you to lecture us on the process of diagnosis, we are quite familiar.

Here’s the deal, you are not describing ALS. There can be a myriad of reasons for swallowing issues and ALS is at the very bottom of that list. My husband had bulbar onset and slurred speech came well before swallowing issues. His voice was never ‘hoarse’. I, however, have some swallowing issues and voice hoarseness and I have GERD and a hiatal hernia. I never worried about ALS as those problems started because I saw how that disease developed and those symptoms are not it!

You have been examined by multiple doctors and they have not found reason to suspect ALS. You have been asked several times to not post until after you’ve been seen by your neuro. We simply cannot hold your hand for 7 weeks, no time for that as we are dealing with folks who have ALS. If you need support then you need to find another forum or a counselor for that.

Best wishes,
Tracy

 

[KarenNWendyn]

Antologia — yes, ALS can sometimes be tricky to diagnose. You’ve been having symptoms since 2013. That’s 6 years. And swallowing problems since 2015. That’s 4 years. And during that time, you’ve seen multiple doctors including a neurologist and an ENT, and they have not found evidence of ALS. Your EMG (done while symptomatic) also cleared you of ALS. If you had ALS, you’d either be dead or very disabled after 6 years, and there would be no uncertainty about the diagnosis even with a very slowly progressing case.

This forum is here primarily to support those of us who are dying of this disease, our caregivers, and those who have lost loved ones. It is not our job to provide ongoing emotional support for those who refuse to let go of ALS despite overwhelming evidence they don’t have it. It is not here to be a support group for BFS or health anxiety. We’re happy to answer a few questions for concerned folks, but once we’ve done that, then it’s time for you to move on. Please reread this thread carefully along with the “read before posting” sticky if you still have questions, and keep working with your doctors.

We’re not here to argue with you and we won’t tolerate people arguing with us.

This needs to be the last post on this thread. No need to respond.