Muscle burning and Tremors for two years before sudden onset of ALS-like symptoms

[ariansherian]

Backstory: I am a 20 year old male, with a sudden onset of ALS symptoms, after two years of ALS-unrelated symptoms. I am concerned about juvenile ALS.

In June of 2015, I began feeling tightness in my calf and began tripping on carpets. I began experiencing muscle burning when I exercised, and intention tremors. It should be noted that my tremors affect my entire body, including my eyes. The tremors have been replaced by weakness in some areas of my body, most notably my abdominals. Which has got me interested: are these two separate diseases, or one?

Before the onset of the new symptoms, I have had two clean nerve conduction tests and a clean MRI.

These few symptoms sort of plateaued or got only fractionally worse until August of 2017. From then I got the following symptoms, within a span of three months:

My shoulders felt weak as did my right calf. This was followed by very mild drop in my left foot, weakness in my upper legs, and weakness in forearms.

More recently: food getting stuck in my throat and some difficulty swallowing. There seems to be a weakness in the center of my tongue that makes me stutter/slur occasionally.

Throughout the last 3 months, I have twitching throughout the entire body: mostly legs, stomach and biceps.

I have an appointment in 1 week for an EMG and consultation. I have no family history of ALS, regardless I am still scared.

The only logical scenario would be Myasthenia Gravis explaining the first two years of symptoms, with ALS just settling in recently.

 

[ShiftKicker]

Can you go and read the "READ BEFORE POSTING" pin at the top of the Do I Have ALS subforum please? Your questions will be answered there.

Your statement that you have ALS symptoms is not correct. Nor is your assumption that you have MG and then developed ALS recently. Please get a handle on your anxiety, as it is muddying the waters with regards to your physical symptoms.

Good luck with your emg.

 

[ariansherian]

Hi,

Yes you are correct in that my anxiety is affecting my symptoms. I also know that ALS at my age is rare. I wanted some more insight as to why you think these are not ALS symptoms? Thanks for wishing me luck.

 

[ariansherian]

Also, I have read the pin before posting.

 

[codyclan]

Do other people comment on your slurring, or is it something you notice? Has your doctor diagnosed clinical weakness or do you feel weak? These are important distinctions and reasons that it is highly unlikely that you have ALS.
Post after a visit to the doctor.
Tracy

 

[Firefighter58]

You have no symptoms that point to ALS, why don’t you wait until you have your EMG before you start running around crying the sky is falling. We here have this dreaded disease and I don’t know why you think you might have it.
Al

 

[ariansherian]

Do other people comment on your slurring, or is it something you notice? Has your doctor diagnosed clinical weakness or do you feel weak? These are important distinctions and reasons that it is highly unlikely that you have ALS.
Post after a visit to the doctor.
Tracy

People notice that I mess up when speaking, and I have not been diagnosed with clinical weakness. Right now I'm mostly worried about the swallowing issues. I will post again after my appointment.

 

[Vincent]

The dominant symptom of ALS is clinical weakness. Absent clinical weakness( which the first dr. would have noted) you do not have ALS. Twitching and "feeling" are so common they are not diagnostic of anything. We have a saying here, "if you hear hoofbeats think horses not zebras" You are taking non specific symptoms and jumping at a very rare disease. Get help with anxiety you do not belong here.
Vincent

 

[ShiftKicker]

Please wait till after your emg before responding. There's not much more the folks here can provide you.

 

[ariansherian]

Just got back from the consult with a physician at my local hospital. She basically said I had ALS, and to do the EMG on monday to confirm. My day to day deterioration of the past few days was really quick. pinky is having difficulty typing now. Legs are weak, neck and both hands.

I can't believe It struck me, at 20 years old, I beat Stephen Hawking for ****'s sake.

 

[Bestfriends14]

Hello,

I have to say that an ALS diagnosis without an EMG is something I've not heard before. Perhaps those on the forum who are more experienced can chime in.

Was this physician a neuromuscular ALS specialist? Again, your symptoms and how they are everywhere on your body is highly unusual for ALS, as it is usually an asymmetrical onset type of disease, clinical weakness is present and burning sensations uncommon.

Please get a second opinion after Monday.

 

[Atsugi]

"Sudden onset" is right. In fact, at the speed of progression that you are describing, you'll be totally paralyzed by the time I finish typing this post.

Something is not right. This sounds like no case of ALS I've ever heard.

Arian, you've been all over the Internet getting no satisfaction. A neurologist refused to see you anymore. As BestFriend said, "Please get a second opinion after Monday." Don't you have a regular family physician who knows you well?

 

[ariansherian]

"Sudden onset" is right. In fact, at the speed of progression that you are describing, you'll be totally paralyzed by the time I finish typing this post.

Something is not right. This sounds like no case of ALS I've ever heard.

Arian, you've been all over the Internet getting no satisfaction. A neurologist refused to see you anymore. As BestFriend said, "Please get a second opinion after Monday." Don't you have a regular family physician who knows you well?

I think some things I describe are being lost in translation. I had a Nerve Conduction study on January 27th that was clean, symptoms onset in August, and rapidly worsened these past few weeks.
I am open to suggestions as what this could be, if not ALS. The symptoms dont seem to point anywhere else. As of right now, I am having trouble typing from the weakness in my hands, I am walking unsteadily from the weakness in my upper legs. Again, the symptoms seem to be more concentrated on the right side of body.

I don't have a regular physician, I think any neuro can confirm/deny ALS.

 

[ShiftKicker]

No. A regular neurologist would not diagnose ALS. They might say it could be ALS, but definitely not before conducting an EMG. Even then, they would refer to a neuromuscular specialist to confirm diagnosis.

 

[ariansherian]

At this point im just in venting mode, I hate that this disease affects people so young. I also hate that I am about 20-30 years under the average age of onset.