Is this ALS? An update.

Squallx

Member
Joined
Dec 4, 2024
Messages
15
Reason
Learn about ALS
Diagnosis
00/0000
Country
SE
Hi again! I wanna start by really thanking you who keep answering me and everyone else here in this forum. To just get some feedback from people who have real experience of this disease means the world to all of us. So again! Thank you so much! 🙏🏻

So time has passed since my last thread and I will see a neurologist for the first time on the 7th of January. I have some questions maybe some of you could help me with. My symptoms that have progressed are the following.

I now feel more fatigue than before with an overall feeling of being sick almost everyday.

My left leg feels weaker and has been buzzing almost constantly for weeks. And I have pins and needles in my left heel that come and goes. My limbs seem to fall asleep more often and sometimes it wakes me up in the night. But I don't seem to have any clinical weakness yet compared to my right side.

Sometimes I really feel that shortness of breath and it makes it even exhausting to talk. But it really comes and goes and sometimes from an hour till the next. On the 13th of January I will get a lung function test.

My voice is still hoarse, lower and sometimes feels quieter and like it takes more energy to talk and sing than before.

My throat feels progressively more stiff and weird. I get some pains and the feeling of cramps in the throat sometimes that really scares me! And I also often have that feeling that something is stuck there, like globus. I can almost still eat and drink like normal, it just sometimes feels like food is still in my throat and sometimes I have to swallow more than ones after drinking something.

Everything is not worse though and I have almost no fasciculations. Just some that comes and goes in often the same places, but are never constant.

I used to suddenly get very stiff muscles in my back, neck, calf and stomach but have not had that happen in about two weeks.

Also my neck pain has almost been gone for over a week now.

So what's left is what I feel is a progressively worsening throat and voice. That now more often recurring shortness of breath. A left leg and foot that almost constantly now feels weaker with the ongoing buzzing.

I did a barium swallowing test waiting for the results but the doctor told me right after the scan that he did not see anything going on.

I'm still as afraid of Als as before and my questions are:

Do you think als could present itself this way? With both the worsening throat, shortness of breath and left side leg weakness all coming on and progressing at the same time? And could stiffness in muscles, fasciculations and the neck pain suddenly just get better in als? And also, do you feel tired and sick when you have als? Like you have the flu but without the fever etc.

Any answer would mean the world to me! 🙏🏻
 
I felt fine for a very long time after diagnosis. I get tired now but 1 I am so weak ( clinically) it is hard to do things and 2 which is unrelated I am anemic. But I don’t feel sick or flulike

Some things getting better or coming and going don’t seem like ALS either.

I am glad you are seeing a neurologist. Please go with an open mind ,tell them your symptoms and ask what is wrong. Bring a timeline with bullet points and be as organized as you can so you don’t forget anything. Losts to remind yourself are good because doctor’s visits can be stressful.

Do please let us know what happens
 
Thank you for your answer. I'm really trying to hang on to some kind of hope in all my fear! And what I think and hope is pointing away from ALS is the following:

I have had random short stabbing pain in my throat for over a year before getting my hoarse voice etc.

My shortness of breath has come and gone since I felt it the first time in June of this summer.

My symtoms has come on so quickly and almost everything has developed in just two months.

Except for my weird throat and the hoarseness. Almost every symtom comes and goes and nothing else is yet constant. The longest fasciculation I've had was a week in my biceps but have not had that one again.

Since all this started I often feel sick, sort of burned out and have not been capable of beeing the father I wanna be and doing my everyday shores like I always have.

And before this started I worked like crazy for months and also slept to little. So I understand that all my friends and my family is trying to convince me that this is all stress and anxiety related. And I want to believe that! But my worsening throat, constant hoarse voice, hyperreflexia noted by doctors and my own finding of the clear Jaw Jerk reflex really convinced me this can not just be stress!

But then the weird thing and maybe my strongest grasp of hope is that when I've felt the worse since all this started I have been in stressfull situations with more anxiety. And from what I've read als and the symptoms of the disease would not suddenly get worse cause of a stressful situation and anxiety?

Sorry for this long post. I appreciate any thoughts regarding this! 🙏🏻
 
A small update. I just got back the results of the barium swallowing test. Everything looked good, except for that they saw a small finding of esophageal web in my throat. Does anyone think this could explain my worsening throat and hoarse voice? 🙏🏻 I hope this is not often a finding in als....
 
An esophageal web has nothing to do with ALS. It primarily causes swallowing issues when symptomatic including pain sometimes. Have you had recent labs ? It is frequently associated with anemia
 
Have you been evaluated for silent reflux? Your throat, voice, etc. can all be caused by that. I'd see an ENT specialist.

When I was firs diagnosed I was full of energy and stayed that way for quite some time. Now, I'm getting fatigued more often and use a wheelchair outside the home.
 
Thank you for answering me! 🙏🏻 I will meet a throat specialist at the end of January. So hopefully they do some more tests and have some answers.

My blood levels has been normal except for high in one ocation. In Sweden they write normal values 130 to 170 gram and I had 179 in November. But other than that and the esophageal web all my tests have so far been normal. Have had a lot of blood work done, brain MRI with contrast, a lung screening and the barium swallowing test.

I have been very stressed this year and I've read some connection between silent reflux and stress. So I guess that's my biggest hope so far... 🙏🏻
 
My niece also has GERD (reflux). Her voice is always hoarse and she even loses her voice on occasion. GERD can cause all kinds of symptoms, but it's easy to treat with meds, dietary changes, and maintaining a good weight.
 
I felt more relaxed yesterday. But during the night I fell back into panic again. My left leg and arm is falling asleep so easily. When I hold my 3 year old daughter with my left arm it gets tired so fast I have to switch arm. My left calf is very clearly smaller than the right. But what scares me the most is my shortness of breath and my throat. One month ago I was not hoarse and the throat felt fine, except from the random shooting pain I've had for months.

If this is als and everything developed so fast, in just two months, I will not see another spring with my daughters.

If someone could please help me think if what I wrote before can give me some hope: 🙏🏻

*What I think and hope is pointing away from ALS is the following:

I have had random short stabbing pain in my throat for over a year before getting my hoarse voice and the problems with my throat.

My shortness of breath has come and gone since I felt it the first time in June of this summer. Sometimes from an hour till the next.

My symtoms has come on so quickly and almost everything has developed in just two months.

Except for my weird throat and the hoarseness. Almost every symtom comes and goes and nothing else is yet constant. The longest fasciculation I've had was a week in my biceps but have not had that one again. And I also have had small twitching body wide.

Since all this started I often feel sick, sort of burned out and have not been capable of being the father I wanna be and doing my everyday shores like I always have.

And before this started I worked like crazy for months and also slept to little. So I understand that all my friends and my family is trying to convince me that this is all stress and anxiety related. And I want to believe that! But my worsening throat, constant hoarse voice, hyperreflexia noted by doctors and my own finding of the clear Jaw Jerk reflex really convinced me this can not just be stress!

But then the weird thing and maybe my strongest grasp of hope is that when I've felt my symtoms and the most "sick" since all this started I have been in stressfull situations, maybe with more anxiety. And from what I've read als and the symptoms of the disease would not suddenly get worse cause of a stressful situation and anxiety?"

Sorry for writing so much. I'm so grateful for any thoughts! 🙏🏻
 
Hello-

You've really received as much help and reassurance as is possible on this forum. The fact you keep saying you' feel better with the answers, then come back a short time later saying you are struggling with worry again means you are in a cycle of reassurance seeking. It's like an itch- you scratch and it feels better briefly, but it comes back, and will continue to do so until you deal with the actual cause. I am not saying your symptoms are all being caused by anxiety (that's for the medical experts) but you can certainly address you anxiety while you work with your doctors to track down the cause. However, an ALS forum is not the place to find either thing- we are not anxiety support, nor can we help with your non-ALS issues.

Please understand that this forum can only provide the most basic of advice and reassurance. We have really helped all we can. The primary focus here is to support those directly affected by an ALS diagnosis and caregivers. We are not a diagnostic, nor anxiety support resource. Consider taking a break from visiting here, as it only seems to continue keeping ALS in your mind, which is unhelpful for you.

Take care.
 
Yes I understand. I have felt very lonely with all my anxiety and thoughts regarding this and I am very happy with all the thoughtful answers I have received here. My doctor said she will help me find someone to talk to. Thank you for everything.

If I update again it will only be if I actually get some worrisome answers from the neurologist and tests I don't understand, I will meet him on the 7th of January.

Take care all you amazing strong people! 🙏🏻
 
We always appreciate when people return to let us know how things work out. It really helps future visitors who have questions themselves- there are so many reasons for various symptoms, so when an explanation is discovered, it provides reassurance.

Take care and all the best in the new year.
 
Hi again! So I met a neurologist for the first time yesterday. It was only during 40 minutes but he had time to check for astrohy, fasciculations and checked my reflexes. Everything was normal except for brisk reflexes billaterral. He said he saw nothing that points towards als. So yesterday I was more relaxed after seeing him.

But today I met the throat doctor. My biggest concern since my symtoms started has been my throat. And three days ago I got really really hoarse and now it's hard to even speak. The voice is breathy and much more quiet than normal and I've lost my higher register when signing. The doctor looked into the throat with a camera. She said it looked iritaded but that the vocal cords moved fine together. But. She also said. That the vocal cords looks a little thin. So there it was, straight back to panic mode.

She could not really calm me down with any explanation for the thin vocal cords more than maybe they've always been like that. And I didn't really get any explanation for why my throat feels very weird all the time and why I've lost my voice, nothing more than maybe overuse or reflux.

So my question. Could my quiet breathy hoarse voice be bulbar onset that after just three months left me almost without a voice? And do you think astrophy of my vocal chords could come along side breathing difficulties, which could explain my quite breathy voice?

Next week I will do a spirometri, lung test, and I'm already afraid what it's going to show.

Any thoughts means a lot! 🙏🏻
 
I doubt either of your questions is a yes. Let us know what the pulmonary testing shows.

Many of us are more squeaky/breathless when the weather is cold/dry. You could be a little more so for all kinds of reasons, including a "normal variant" of how thick your vocal cords are. ALS is not about your throat feeling "weird."

You are certainly at liberty to ask the ENT for any recommendations to try. Hydration throughout the day in addition to treating any GERD or allergies, even empirically with a nasal steroid, may be worth trying.
 
So many times over the past few years we’ve had people worried about
possibly having ALS. They go to a Neurologist… clinical exam then
an EMG… the EMG clears them of ALS. Some still not convinced
go to another Neurologist… again clinical exam another EMG
clears them of ALS. Then… a week or weeks later they begin to
be concerned with the possibility Bulbar ALS believing something
may have been missed with their previous EMGs.

Just can’t let ALS go. (Not saying directly to you.... but maybe.)

The real villain is Dr. Google. Then, unfortunately, is staying on this
Forum reading old Threads. I have followed some reading old Threads
going back to 2016, 2018, 2020. Some, with 10, 12+ replies from
our extremely ALS knowledgeable members (Mods) finally had to
close their Threads.

The powerful effect of Health Anxiety.

I really hope your future appointments bring a resolution (cure) so
that you can move onto a healthy happy life. Something PALS do not
have and CALS care for..
 
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