Help For Als Fear

[lawyer2553]

Hello, first of all, I apologize for my bad English. My twitching started in May 2022. Since then, about 2.5 months have passed and I am experiencing deep fears. Twitching is all over my body.

In January 2024, I went to an associate professor neurologist. He performed a needle EMG test, and in this test, he looked at my lower right leg, upper right leg and upper right arm and said it was sufficient and clean. But he said to come for a check-up in 6 months. 6 months later, I went to a different doctor for a check-up. He was a specialist neurologist. He also looked at my lower right leg, upper right leg and upper right arm with a needle EMG and said it was clean and wrote that in the report. But he frowned at one point while doing the EMG.

1 week after this check-up, I went to my first associate professor neurologist. This time, he looked at my lower left leg, lower right leg and said it was clean. He said you don't need to come for a check-up. 1 month later, I went to a different specialist neurologist in a private hospital. He also looked at my right lower leg, right upper leg, left lower leg, left upper leg, left lower arm, right upper arm and said it was clean and I did not have ALS. This is what he wrote in the report.

However, while doing the EMG test on the device, he asked me "do you have a hernia?" This question scared me. I wonder if he saw any damage there and that's why he asked? The questions I want to ask are: 1) I have weakness in my right thumb. But I can move it. How do I know if this is ALS weakness? 2) Do Herniated Disc and ALS show the same images on EMG? 3) If I had ALS, would I only have twitching for 2.5 years? I am very scared and I cannot prepare for my exams, please help.

 

[Nikki J]

1 if he saw something concerning on the emg he would have said. Maybe a translation issue but if hernia is correct he would see with his eyes or feel with his hands and they don’t show on emg
1 b 2.5 years of normal emgs and doctor visits
2 not usually
3 no.

Time to move on. Get help with your anxiety if it is interfering with your studying. Don’t ruin your life

 

[lawyer2553]

Have you ever seen the patient who experienced only twitching for 2 years and then experienced weakness? 2 Does the fact that I have experienced only twitching and no clinical weakness for 2.5 years definitely indicate that I do not have ALS?

 

[Nikki J]

No And if you were twitching due to ALS your emgs would not be normal nor would your clinical exam be normal.

 

[lawyer2553]

He went to my doctor, who has a doctor's degree, and he did an emg again for my complaints and twitches in my right arm. However, only my biceps and deltoid muscles on my right arm were examined. If it was involved, if it was in the triceps, were there findings in the biceps and deltoid muscle EMG? Because twitching and weakness are in the triceps thanks for help sir

 

[lgelb]

Yes, if ALS was affecting your triceps, the EMG in surrounding muscles would have been abnormal. You are in the clear. If you cannot get over your fears, counseling can help. You might also consider therapeutic massage for your arm.

 

[lawyer2553]

I would like to ask a few things with your permission:



1) Does vitamin D deficiency cause twitching?

2) Do Als Patients experience eye twitching? I also have twitching in my eyes and I heard that the eyes are affected in Als eyes.

 

[ShiftKicker]

1) Yes, absolutely
2) Eye twitching is more closely associated with stress.

 

[Nikki J]

1 yes

2 yes sometimes like everyone does. It is not worrying for ALS. When I was asymptomatic I was in a study of carriers. In between visits the doctor’s assistants called periodically and asked about every symptom you could imagine even twitching but they were specifically instructed not to care about eye twitching or to even record it because it is so common in healthy people As noted above it os extra common with stress

 

[lawyer2553]

In the test I had in May 2024, my vitamin D level was 16.7 ng/ml. Before my twitches started, the test I took was around 15 in 2022. In the articles I researched, I read that vitamin D deficiency does not cause twitching. If this is the case, should I take vitamin D supplements? Or different food supplements?

 

[ShiftKicker]

This really would be something to discuss with your doctors. They have your health history and the professional training to provide you medical care and advice. This forum exists to provide support for those directly affected by an ALS diagnosis and really can't be used for general medical advice.

Please take care

 

[lawyer2553]

Hello, thank you for all your kind and valuable answers. twitching in a muscle, if present due to Als; If the needle emg test done only on the muscle is normal, but does it indicate that the twitching in the muscle is getting worse? Is the twitch whether the electrical activity in that muscle is impaired? Therefore, if there is twitching in only one muscle and only that muscle is examined with needle emg, is this sufficient?

 

[lgelb]

The EMG will not accord with the twitching you perceive. It measures damage, not your perceptions.

Since twitching and ALS are not the same thing, any responsible examiner if seriously needing to rule out ALS as well as other disorders, would sample multiple muscles, not just one.

 

[lawyer2553]

I have my judge exam in 20 days and my mind is completely filled with the fear of ALS. I have been examined by many doctors, including my departments in the articles, and my upper and lower extremities have been examined.

Only one of the doctors examined the left deltoid during the needle emg test and asked if there was a hernia. This is driving me crazy. Could he have seen something there and interpreted it as a hernia? When I wrote to him, he said that he could not see anything in the emg, but he did not do this because I had complaints.

The doctor showed me the screen and the complexity of the nerves on the screen. The doctor said that the separation was very stressful and that I had strained my arm. And when he brought my arm properly the signals stopped correctly 5 6 seconds later but again he said there was complexity and what I meant.

In the report, it was written that it was normal for the muscle and that there were no findings suggestive of motor parts. He continued to make fun of me while doing the needle emg test. 2.5 years just because I lived and was so scared. Could it be that the small irregularities were written as normal on emg because I was so scared?

 

[lgelb]

I can't think how a hernia in your torso could affect motor neurons that control your L deltoid. Maybe he was asking because of the symptoms you mentioned. A hiatal hernia could affect your appetite and nutrition and possibly lead to more twitching. You can ask your primary physician if you need to be tested for this.

Nor can I think why a doctor would decide to write something he knew to be false in a report just because you were scared. Lots of people who get EMGs are scared. Examiners still write accurate complete reports to avoid risk to themselves and the patient. As an attorney, you will be aware that such a misstatement would be legally as well as professionally risky for them. The tracings are stored in the cloud for future documentation if needed.

I cannot interpret a frown, nor can you. Maybe he was having a bad day. I am sure that if you were pleading a case before a judge and he frowned, you could still win your case.

If a doctor made fun of you, you certainly have the right to complain to the patient advocate or clinic director.

I believe we have answered your questions. 2.5y of twitching without a functional impairment and with clean EMGs is not ALS. As you say, you are very scared but you need to prepare for your exam. So I encourage you to talk with a friend, colleague, counselor, clergyman, anyone who can discuss this honestly and support the reassurance that we have expressed here. This forum cannot replace that person for you.