Throat problems and BFS

[chappy]

Hi!

I’ve been having muscle twitches on my arms, legs, and really throughout my body now for almost two years. I noticed them after I got the COVID vax.

Then when I got COVID, I had muscle weakness and fatigue for about 8 months. I progressively got better but my twitches have continued.

Neurologist did EMG and it was normal.

About two months ago, I got sick with a cold and then flu with really bad cough for a month (And I also deal with GERD) and noticed that it felt difficult to swallow. I Can eat and drink but it feels like I have a lump in my throat that won’t go away. I have seen my doctor and he is ordering an endoscopy.

The neurologist said that he is leaning towards a LONG COVID diagnosis and he legit said that I have as much of a chance of having ALS as he does.

While I still have BFS, I able to cycle and run. But now that I’m having throat issues, I am worried about ALS (again!).

Does this sound like ALS?

 

[Clearwater AL]

Chappy…

Your Neurologist did the EMG and it was normal.

The neurologist said that he is leaning towards a LONG COVID diagnosis
and he said that you have as much of a chance of having ALS as he does.

.What great news… so many would celebrate and go on with their lives.
Real PALS can’t.

Once again, as so many before you, you are dealing with considerable
Health Anxiety “I am worried about ALS (again!)”.

And again and again like others you have posted a new symptom...
your throat. Typical to Health Anxiety seen so many times before.

Talk to your doctor for help with that. This forum is not here to
hold your hand while you worry AGAIN about ALS.

I hope you can find the path to put ALS out of your concern.

 

[KimT]

Just wanted to let you know that GERD can cause trouble swallowing, hoarseness, feeling of a lump in your throat. I've had GERD since I was young. The things that helped me were not eating for five hours before bed, no alcohol, no caffeine, plenty of water throughout the day, and finding trigger foods. There's a book called Dropping Acid on Amazon that is good advice from a doctor regarding GERD.

Don't worry about ALS or any other motor neuron disease.

 

[chappy]

I’ve read your comments on other threads. You are blunt and frankly, I believe you’re breaking some of the rules in the forum guidelines. You words would be helpful IF they were met with empathy and understanding.

The comments made me laugh out loud.

I followed the forum guidelines and posted in a thread where I thought but was acceptable to share what I’m going through.

When I continue to have symptoms and then I see new ones, it’s quite natural for our heads to spin.

My post was prompted by my head spinning. I do not want symptoms, my head spinning, or having to see my neurologist every six months.

For my sake, I believe you’re right that there is some health anxiety. And I hope that’s all it is. I won’t respond to your comments again.

 

[Clearwater AL]

Choppy... " I believe you’re breaking some of the rules in the forum guidelines."

Please point them out so the Mods can address them to me. Or point them
out to the Mods in a PM.

I stand by everything I pointed out to you and strongly addressed
concerning your considerable Health Anxiety.

At least you got a good laugh... I'd bet you were the only one.

 

[lgelb]

To clarify for future readers, "health anxiety" ≠ "I want to have symptoms" or "I want to feel bad."

It is a treatable condition in which the mind works overtime, magnifying physical issues to the point that they seem more threatening than they really are.

Where you posted is fine and acceptable, as you say, Chappy, but as you might expect for people whose lives are/were affected by ALS, kinder, gentler wording is not always on offer.

Al's post above, while blunt, does not contradict any forum guidelines. In saying essentially, "begone and get help to see if you have health anxiety and if so address it," he is saying something that is really very encouraging, the idea that you can live a life that others here cannot, and that your health at the moment seems to a large extent in your own hands.

Apart from counseling if you need it, the best way to parse what is long COVID/GERD/something else vs. what is your mind, is to live your best life "as if," follow out the endo and any other recommended testing, and stay away from ALS content on and off line.

 

[chappy]

Al, my apologies.

I was not aware that being blunt was part the forum culture. I can see why that is. I don’t agree with it, but I understand.

My biggest issue now is my throat. Since I was having benign fasciculation’s, I just wondered if maybe I was experiencing bulbar issues because of my throat problems that recently emerged.

The sensation of a lump in my throat has caused concern. My tongue is fine. My speech is fine.

I have a follow up with the neurologist in six months.

I guess I’m wondering, would I have bulbar als even after my EMG on my legs was normal? He didn’t check my throat since it wasn’t a problem when I first got assessed and tested.

I Can swallow food. I just get some particles that get stuck due to the lump.

This will be my final question and I’ll be gone and live my life.

 

[lgelb]

I have never heard of bulbar ALS onset that manifested as a lump sensation without impaired speech, swallowing, or breathing.

But such sensations are common with dry mouth, GERD, allergies, stress, dehydration, etc. Even shifting weather.

You can certainly ask your regular doctor to look at your throat and palpate that area. If they think there might be something, they will refer you to an ENT.

 

[chappy]

thank you for your response. I realize it is a major privilege to interact with folks who have been affected by ALS. I can see how this is a very honoring and supportive space. I'm a chaplain that has supported a number of families with illness. I appreciate your time and will move on to continue living my life. I pray for the medical science community to come up with a breakthrough for ALS.

 

[Colleen15]

The lump in throat feeling can be due to anxiety. I had it for years, before ALS.

 

[chappy]

I need your input and even pushback.

Been seeing a neurologist. He did an EMG on my legs. Everything was normal.

Now my right hand feels weak. And I’ve been having problems with my throat.

I still have twitches on my legs and arms. Doctor said they were benign and most likely due to long COVID.

I haven’t dropped anything. Right hand just feels stiff and different than usual. And throat has been giving me problems this year. No choking or tremors in tongue or throat. Lots of clearing of my throat.

Am I just anxious? I have full function of my hand. Just feels stiffer than usual.

I’m ok with you telling me “be gone”…you have nothing to worry about.

But I guess my question is, if they did an EMG on legs and lower back (or something like that and CT scan) and everything was normal, would en EMG on my arms show different results? I’m sorry. I am sure I’m probably stressing out for no reason. Ever since COVID last year, my body has not been the same.

 

[ShiftKicker]

Hello-

I've moved your post to your already existing thread. It helps keep things in order and provides information about what has already been discussed.

A few things-

Your mention of covid indicates a possible connection- read more here: Covid19 and Neurological Symptoms

If you've already been cleared of ALS via EMG on symptomatic limb/s, then that is unlikely to change.

As always, we recommend that you speak with your doctors if things have changed or something new has popped up, as they already have a baseline from previous exams and can provide you feedback based on another examination. Posting here and asking for opinions based on your subjective experience is more about speculation and not likely to net you any real answers or diagnosis. What it is more likely to do is increase anxiety despite your goal of relieving it.

Your best bet is to have a visit with your doctor to discuss your current concerns and to get proper feedback based on a clinical exam. They can provide you more in the way of information based on what they observe right then and there.

Take care

 

[chappy]

thx for responding. I thought if an EMG was done on my legs and it was normal that it would be different if done on my arms/hands. But it sounds like that's not the case. I have a follow up in October.

It is not impeding with me being able to function. I have tightness in my forearm and in my arm. I wonder if it's carpel tunnel syndrome. I play drums, type a lot, and we have also being doing more car detail business work. Long Covid has also made my muscles fatigued. I wonder if it's just those things. I need better ways to cope with the anxiety. My apologies and thank you for your help.

 

[Clearwater AL]

Chappy, playing drums can be a stress on your forearms and wrists and
if you are right handed or left handed. Left handed is a little more
difficult. Try giving the drums a break for a while. You won't lose it
when you get your issues behind you. Many drummers have taken
time off to avoid burn out. Playing drums is the most physical of a
band.

I do hope you find positive ways to relieve your Health Anxiety.

 

[Bestfriends14]

No loss of function= no ALS. Constant posting on an ALS forum with no ALS symptoms= health anxiety. Please go get help for your HA so you can enjoy the life you've been so blessed to have.