Please help! Do I have bulbar onset?

[Squallx]

Hi! I'm a 40 year old man writing from Sweden. Im scared to death and living in a terrible limbo right now. All I can think of is my two beautiful daughters 3 and 6.

So here is my story.

For months I felt random stabbing pain at different places in my head and in my throat. I also had eispodes where the left side of my face suddenly went stiff in a weird way. 2 months ago I felt out of breath in a way I never felt before. I went to the doctor and they thought it's from stress. I didn't think more about it and it became better. At the same time my left biceps startet to twitch and it did so for a weak. After that the left leg did twitch for a couple of days. During all this time my throat always felt weird. And two weeks ago my voice suddenly became hoarse. And its still hoarse and feels weeker.

I meet two doctors during this time. They both did a neuro examination, one said I had a brisk reflex in one knee. The other said both knees is brisk but my triceps and biceps was brisk on only one side and not the other. Babinski negative.

Now for the reasons why I'm so scared! One week ago I started to feel like it's harder to swallow, with white phelgm starting to collect in my throat. Now when I wake up and during the day I have to cough hard to have a chance to get it up. And for the last couple of days my shortness of breath has become much worse.
Yesterday evening I tried the jaw jerk reflex on my own and it's very clear my mouth jerks upwards. I slept terribly after this and today when I woke up it felt like I can't breathe, like it's hard to even get the air down. The back of my neck aches today and if I push my tounge to one side in my mouth it feels weird under it.

I'm so scared everything just will go downhill from here! My voice is getting worse. I'm just waiting to have problems swallowing and if it gets harder to breathe I dont know what to do.

I have an appointment with a doctor on Tuesday but if my breathing is worse tomorrow I will have to go to the emergency.

Does this sound like a very fast onset of Als?!
I'm so grateful for any answer!

I forgot to mention that I've had one mri with contrast of the brain that was clean.

 

[lgelb]

No, it doesn't. My first thought would be sleep apnea or a movement disorder, maybe even a new environmental or food allergy. I wonder if you have tracked your sleep with a fitness tracker or smart watch? You can get some good data. It sounds like poor sleep could be a culprit for many of your issues.

You could also have a post-viral syndrome, even if you never tested positive or went to the doctor for it.

Some things NOT to do: don't try to test your jaw or other reflexes on your own. It can do more harm than good. It could be worth trying a room humidifier, making sure your furnace filters are clean, switching pillows, trying a nasal steroid, and doing something relaxing before bed instead of worrying (easier said than done, I know).

Try not to worry -- enjoy your daughters.

 

[Squallx]

Thank you so much for answering me!
I did forget to mention my cramps where the muscles becomes very hard. I've had them in my throat, my left calf, in the muscles around my stomach and now lately I can feel that different muscles in my back is cramping up more and more and it really scares me, maybe that's why it's so hard to breathe sometimes. And I also didn't mention my left leg, where I have tremors and it feels more and more weak every day.

So to summarise.
I have:

*A hoarse voice since weeks.
*A throat that's been feeling weird for weeks with
short cramps and short pains and it feels like I
can't swallow like I used to.
*Muscles that suddenly becomes hard and stiff
like a cramp, and that have become worse. Now
mostly in my back.
*White thicker phelgm that is hard to get up when
I cough.
*Shortness of breath that have become much
worse over the last few days.
*A left leg with tremors and it feels weak.
*No feeling of hunger and I've lost 5 kg in two
weeks.
*Hyper reflexes in both my knees +4 and brisk
reflexes on only one side biceps triceps.
*A very clear Jaw Jerk.

I'm so terrified and convinced this is als so please if you could explain why it doesn't sound like it?

 

[lgelb]

You can add all the symptoms you want -- it's not going to change the conclusion, and if you can't get past these fears, you should seek counseling.

It is not any one thing you said, it's the pattern. For one, ALS does not get worse every day. Breathing problems are often down to anxiety when they come on suddenly in a healthy person. Voice changes can relate to dry mouth, poor sleep, etc., also often associated with anxiety. Brisk reflexes bilaterally in knees mean nothing special in this context. You have listed problems in literally every area of your body. It's not how ALS presents, fortunately.

Tuesday is four days away. Live your best life till then, and every day after.

 

[Squallx]

Thanks for answering me again Igelb!
Just to clarify.

So you mean als would not present itself this way cause it's happening to fast and its to widespread?

I was seeing a doctor regarding my shortness of breath in October so it's two months ago. I know als can progress very fast sometimes and things have just added on since then. But you still think it's to fast?

From what I've read neurological symptoms together with a clear Jaw Jerk and hyperreflexia is a very bad sign. Or have I misunderstood that?

I have more pain in my neck and back today and am scared it's the muscles starting to give up.

Update: I also started to have like shiwers that runs through my body and often over my head. And I feel a lump sensation in my throat very often now. I'm so sad and scared!

Please I'm so grateful if someone could help me understand if this could be a very fast onset of Als? Or if it is like you wrote above, that everything that's going on points to something else?

 

[lgelb]

Yes/yes/yes. Hyperreflexia has many possible causes. A jaw jerk as you interpret it can be evoked through anxiety alone.

Shivers, lumps, etc. don't change that this sounds nothing like ALS. Stop reading. Keep living. Get counseling. Drink a non-dairy fruit/protein smoothie if eating is hard.

Let us know what the doctor says on Tuesday, but please don't post again till then. Focus on what you can do today to feel better.

 

[Squallx]

Hi again!

So I met the doctor today. My shortness of breath is worse and when the doctor listened to my lungs she ordered a screening of my lungs that I will do tomorrow. She also ordered one of those swallowing tests. When I woke up my left leg and thigh was really stiff and has been feeling weird the whole day. Everything has been on my left side and the left leg has been feeling weird for weeks. I also feel pain from my neck and it's been worse the last couple of days.

I have so much anxiety and I'm thinking this. Last summer I had back pain in specific places on my back and went to the doctor. In a month it almost disappeared. But from time till time the same places has been hurting.

In July this summer I felt my shortness of breath for the first time. But in a week it was better. In October I contacted a doctor cause I was feeling it again. And from then I've lived with my shortness of breath, it's been worse some days and better other.

So this is what I think. ASL started with the muscles in my back. It's been going on from the summer of 2023 when I started having my back pain. In July this summer the breathing muscle was so affected that I started to notice it. It then moved on and started to affect my throat and I've had a lower hoarse voice for more then three weeks, it moved to the muscles in my neck and now to my left leg and thigh. I have so many sensations in my head where parts will become stiff and my lips start to tingle and I get short stabbing pains that I think is from the trigeminal nerve that's starting to become affected.

In my nightmare from here everything will just become worse. My breathing, my throat, the neck, the leg.

Sorry for this long text. But what do you think of all this? It means the world to me to get and answer from someone with all your experience of this terrible decise!

I really can't fint another thing that can explain everything I'm going through. But I'm really grasping for every little piece of hope I can find.

 

[Nikki J]

It doesn’t sound like any ALS I have ever heard of. You don’t get tingling and stabbing pains with ALS. The breathing would not have improved for a time. Back pain to start- no. Sensations in your head - no Head to toe symptoms. No reported loss of function. Could be many things but not ALS.

 

[Squallx]

But from everything I've read it's not true. There is many reports about pain in als. Both from the absolute onset till, of course later in the decise. People get tingling, shooting pains, cramps, burning sensations etc from ALS. This is just one of many sites that write about it. Does ALS Cause Pain?

If it was so easy als = no pain it would have been easier to just try and move on...

 

[Nikki J]

It doesn’t sound like these things apply to you
From your link
Other sources of pain in ALS can include:

constipation
pain related to treatments like the placement of a feeding or breathing tube
injuries caused by tripping or falling
bedsores from extended bed rest
muscle weakness that can put more pressure on other muscles and joints and make you more prone to injuries
loss of fat under your skin, which might make you more prone to nerve compression
joint stiffness and scarring created by capsulitis (frozen shoulder syndrome)
swallowing or breathing difficulties, especially when lying flat in bed

The hallmark of ALS is clinical weakness. It leads to all of the above Your back pain for example was not cramps or spasticity which are the only early painful events really

But you can not believe us. That is fine. We are not going to argue anymore though. Work with your doctors please only post again if you have a definite diagnosis of something

 

[lgelb]

You are completely misinterpreting both the link you posted and Nikki's explanation. All your self-diagnosis and the sequence of events you imagine has nothing to do with ALS.

If you get pain by hitting your finger, will it be ALS? The pain you feel is from another cause than ALS. Please don't post again until after your pulmonary testing.