So confused and worried for ALS, 23 Male

[MarioMeza]

First of all, I am very grateful for allowing me to publish my case to receive some kind of help. I'm not looking for a diagnosis, but to see if my experience has any similarity to ALS.

Well, it all started in January of this year 2024.

On January 16, 2024, a cat bit and scratched my hand horribly, 3 days later I began to develop a viral infection that I had never had in my life. My glands, throat, uvula, and ears became very swollen, I reached a temperature of 39 degrees Celsius or 102.2 Fahrenheit and I was taking antibiotics but they didn't work, I was like this for about 10 days before the sore throat went down, I had The very high heart rate reached 120 but in the first days, one night trying to sleep, a fasciculation began in my left shoulder, I completely ignored it, I thought it was from anxiety and at that moment my genuine and gigantic concern was that I was having rabies, those were moments Mentally desperate, I genuinely thought I was doomed to death.
Approximately 10 days after my infection started, my symptoms improved although I continued to have severe ear inflammation, so I decided to go to the otorhinolaryngologist, who inserted a camera into my ear and noticed persistent inflammation in my left ear.

Obviously the cat is still alive and I have ruled out rabies.

But I noticed that the fasciculations were persistent, especially in my left arm and shoulder, but I continued to ignore them. and while driving I felt a phantom sensation in my right hand as if it were not there (currently I don't have that sensation)

After 2 months of fasciculations, I searched on Google and found the worst; ALS.

Obviously I panicked and went to the family doctor who told me that it was unlikely that it was ALS. He did physical tests of reflexes and didn't notice anything.

It has been 4 months since that strong infection. My first fasciculations at the beginning were focused on a single point like my left shoulder and it vibrated all day and sometimes it stopped, during these 4 months it went from my left shoulder to my elbow of my right arm, then behind my right knee. Then they decentralized and spread throughout my body, lips, face, neck, calves, hands, back, belly, etc. Even on the scalp.

3 days ago I went to the neurologist, I told him my story, and on April 17, 2024, they will do tests to rule out ALS. Even so, the doctor tested me on my strength, on following his finger, on pointing my nose with my finger, on making faces. and gestures, as well as reflex tests with a hammer. I have no clinical weakness. It seems that he didn't notice anything strange and I asked him what he thought?

He told me that it was unlikely that it was ALS because the characteristics are not compatible.

But I wanted to ask in this friendly forum, based on the experience of those who have had ALS or those who have been with people with ALS, ask if my case could be ALS. Obviously no one has a crystal ball to predict the future, but I would like to know if anything I have said would fit ALS.

I consider myself a super anxious person, that is something that people have noticed in me, they have even told me, and especially with the cat experience it was a super strong episode of hypochondria, and since I was 13 years old when a teacher noticed that my hands were shaking a little bit, he let me know, I didn't notice anything strange but others did, at approximately 16 years old I went to a doctor who, without doing any medical tests, commented that the myelin that covered the nerves in my hands were stripped like wires. and that's why my hands were shaking slightly.
Something that I notice sensorially is that when I am charged with static electricity and I touch something metal and I am discharged from the static electricity, it hurts a lot, unlike other people who are discharged from static electricity, which does not hurt them.

I mention this because perhaps there could be some clue there, some demyelinating disease developing years ago, perhaps?, but I have doubts, something since I was 13? 10 years developing? ALS?
Or have I developed Guillain Barre syndrome due to the infection? but 4 months even with fasciculations? could be?

Or maybe the infection itself was so bad that it left some damage to my central nervous system? maybe?

I know you are not the doctor here on this forum and I am not looking for a diagnosis, I just want to see your experiences with ALS or that you live with someone with ALS if there might be something that fits my symptoms.


Just to mention other things from the past, in October 2023, while I was at the gym, a small crystal appeared in my left eye, I tried to remove it but I couldn't and it started to grow so I decided to go home while I was driving I felt weakness in my arm left as if it were a stroke, but everything returned to normal in 1 hour, the entire episode lasted 1 hour.

Maybe that has nothing to do with one thing and the other, but I only mention it in case it could give some clue, the internet also thinks it could be Sjögren's syndrome, But I don't know if the problem of dry lips has any relationship with Sjögren's syndrome.
Other symptoms that I have had (before 2024) for years are like flies or floating black spots in my vision that follow wherever I look.

I also have a little tinnitus, like that noise of crickets in the silence in my left ear. It's not very annoying, but I mention it in case it could indicate something.

It also seems like I have a bit of a kidney problem. According to my blood tests, from 1 month ago, my creatinine mg/dL is 1.53 when the healthy range is 0.6 - 1.20.
I have high cholesterol, I came out with 224 and it is recommended to be below 200
In my partial liver function my direct bilirubin mg/dL came out at 0.34 and the healthy range is 0.00 - 0.30.
And other data that suggests that he could perhaps have slight kidney damage, perhaps that could cause electrolyte imbalances that also cause fasciculations, perhaps?

To conclude, I thank you very much for reading all of this and I also promise to update my situation, so that other people have references.

 

[lgelb]

Were you tested for cat scratch fever? A bacterial infection, it's usually not a big deal but sometimes it can cause problems such as you describe, suggesting testing and consideration of antibiotics. I don't see ALS in this at all. But I would see an infectious disease specialist.

 

[MarioMeza]

I never did an antibody test or anything like that during the infection because I honestly thought it was something that would go away quickly, 1 month ago when I went to a psychiatrist and I mentioned the cat thing, he was very sure I had the infection from the scratch. of cat.

But my question is, are we going to assume that if it was that, would there be remnants of what happened on January 16?
4 months later still with traces of that strong infection?
for example these fasciculations?

I must say that my fasciculations are rare, they are not persistent, for example as I write this there are none, but maybe in 2 minutes I will have one in my calf and it will last a few seconds.

 

[Nikki J]

The twitching can feed on themselves especially in a “super anxious person”. Any chemical imbalances can contribute

In your place I would be a lot more worried about the creatinine value. You are very young and you need your kidneys to keep working for a very long time. Now is the time to clean up your diet ,exercise and get risk factors like cholesterol under control.

 

[MarioMeza]

Based on your experiences reading other cases of confirmed ALS.

Like how many cases of ALS started with fasciculations? few, many?

Do fasciculations increase in intensity if you have ALS? or decrease?

The thing is that my fasciculations are rare, for example since I woke up today, I have felt few twitches and they have come and gone super quickly.

From what I have read and seen on the Internet, the fasciculations of people diagnosed with ALS began and never ended and were in a focused point or in areas where muscle weakness and atrophy already existed.

Based on everything I found about the cat, couldn't it be remnants of the infection? Could it be that the infection damaged my nerves?

 

[Nikki J]

Very very few. And ALS is ultra rare in your age group without family history

Could you have some permanent non healed yet injury from the infection? Yes I am sure it is possible.

You can’t say anything about twitches not are specific to ALS. But you have presented no reason to fear it. The twitches may persist especially if you keep worrying about them. Your best bet is to leave here and all the groups elsewhere that will feed your worry.

 

[MarioMeza]

This is exactly what I see and believe, the spasms do not indicate anything, they can be caused by electrolyte imbalances, or by many other things.
On Facebook I saw a man who has had fasciculations for 40 years.

In a few days they will do tests and I will go to the neurologist again, I will update everything here.

 

[MarioMeza]

EMG results
Yes, I am very anxious and now I started playing at being a doctor and reviewing my studies without even going to the neurologist. Although it is true, the conclusion on the first page of the tests says the following:

1.Negative in absolute terms for motor neuron disease
2.There is no involvement of motor or sensory nerves
3.There is no data on myopathic affection in its variants
4.There are no signs of acute denervation in any of the muscles and segments explored, in the four extremities.

But upon reviewing, I realized that on the left side of some tests, there are low numbers.

As Amp (mV)
Ankle: Left 3.3 and Right 7.1
o Tibial nerve
M wave Amplitude mV Left 3.000 and Right 15.167

Why is there less on the left in some parameters? Could it be an indication that something bad is starting?

 

[Nikki J]

Did you mark these reports up? Even if you did not the interpreting doctor, who has years of med school and residency on top of whatever practice hours that you do not, found them clinically insignificant. Am
Anyway those numbers are related to your nerve conduction study which is not an ALS test.

Your emg clears you of als. Please work with your doctor but your answer is not here

 

[MarioMeza]

I was the one who marked that with yellow, I was the one who did this analysis playing at being a doctor.

In the summary of the report, the neurologist who did the EMG marked everything as "normal" and that there was no evidence of ALS.
"nerve conduction study which is not an ALS test."
What do you mean, sorry, I didn't understand.

After a while I will go to my other neurologist who ordered the tests, I will ask him about that data.

 

[Nikki J]

The numbers you think are meaningful even though the doctor did not think so are from your nerve conduction study ( the shocks). That is not a test for ALS. THE EMG ( needles) is the ALS test. The report says both tests were normal. Until you go to medical school and neurology residency you are not qualified to dosagree with your doctor’s interpretation

 

[MarioMeza]

Oh ok thanks, that clarifies some doubts for me, I don't want to sound stubborn, but why were some data (not all) from some parts of the left lower than those on the right? (Amp (mV))

What could cause it?

or could it be something normal?

 

[Nikki J]

Ask your doctor. Since they didn’t comment on the report it is presumably a normal variant We are not symmetrical. But your doctor is the person to ask.

 

[ShiftKicker]

This is something you must discuss with your medical provider. This forum is here to provide basic information about the ALS diagnostic process, but it's primary function is to provide support for those who have been directly affected by a diagnosis of ALS- either themself or a loved one.

 

[MarioMeza]

Yesterday I went to the neurologist, he coldly and calmly reviewed my studies, and he said "ALS is ruled out."
I asked him about the left thing, he told me that it doesn't mean anything, if you stand on one leg more than the other, if you are left or right-handed, all that has an influence.

I'm going to try to rest because even though he told me I don't have ALS, my anxious brain doesn't understand it.

And about 2-3 days ago, I realized that I felt something in my throat so I started constantly "clearing my throat", like when you have mucus stuck in your throat.
Since yesterday or the day before I began to feel that it was difficult for me to breathe.
I told the neurologist about it but he didn't tell me anything.
In recent nights I have had sleep myoclonias, like when you move suddenly because you think you are falling.

For example today, I literally jumped from the waist up while lying down.
I thought it might be bulbar ALS, but my goodness, 3 days so fast? and I do not have other classic symptoms such as choking when drinking or eating, no change in voice, no obvious twitching of the tongue, etc.

My dad got angry yesterday, he said that he was tired of my ailments, I told him that it was not my intention to bother him.
So for now, I am no longer thinking of going back to the doctor even though I have this annoying sensation in my throat and the feeling of lack of air, it could be something else.
Once months ago, I suddenly got out of bed to take a deep breath, it seemed like I hadn't breathed for seconds.

Maybe it's sleep apnea, anxiety, I don't know, for now I hope it doesn't get worse, something that reassured me is that last night I felt like I couldn't breathe but today in the morning I felt fine, and technically I should have had more problems breathing lying down but it wasn't like that.

For now I just have to wait