Could this be ALS?

[BranMuffinBear]

Hello everyone. Thank you in advance for taking the time to read my post. I've received a lot of relief and understanding by reading the other posts and your replies on this forum.

I am a 27-year-old male, and I have been a type 1 diabetic for 25 years. Lately, I've been having some symptoms that have caused me a great deal of concern and anxiety (to the point where I'm now seeing a therapist). Just as a forward - I've had a preliminary visit with a neurologist, did an EEG today, will do an MRI tomorrow, and will have an EMG and follow up visit with a neurologist on the 30th of this month.

My symptoms:
6 Months: daily body wide twitching (from head to toes) - I've read the sticky and was content for a while that I just had BFS until more recently

3 Months: mild tremor, my right hand shakes during use about 90% of the time while my left hand shakes about 30% of the time. It is very mild and only noticeable when my hands are suspended in air (not resting) and sometimes when I am using my phone.

1 Month: I only know how to describe this as a weakening of my right hand/arm (my dominant hand). Objects feel heavier in my right hand, holding my phone, or the steering wheel while driving, with my right hand makes my fingers and arms ache after a short while. My finger dexterity in my right hand has decreased and have begun to feel a little uncoordinated (to the point where I would rather use my phone or drive with my left hand because it feels more natural). I know that ALS is about failing, not feeling; but I'm so concerned that this will progress to the point of clinical weakness.

Possibly unrelated: sometimes my left foot feels like it's vibrating (like a phone going off inside my foot).

Anyways, that's all I have at this point. I would love to get some feedback from the people who know more about this kind of thing. I know that the only true answers will come from the doctor, but I'm going crazy waiting for results. Thank you again for reading.

-B

 

[affected]

I'm sorry you are dealing with all this.

I think we try to be clear in the sticky when we say ALS is about failing not feeling is that we say over and over - you will not feel weak as precursor to becoming weak. It is about suddenly being weak and a doctor can measure it. You will feel the same.

So when people come here saying they feel weak and are worried it will lead to clinical weakness, they are not describing ALS.

You don't describe ALS even a tiny bit I'm so pleased to tell you. All the best.

 

[lgelb]

B, Tillie is right -- you don't have any reason for concern. In addition to any neuro consults, if you have not done so, I would see your endo to make sure your diabetes is as well-controlled as it should be.

Best,
Laurie

 

[BranMuffinBear]

Thank you to you both. I will report back after my Neuro appt on the 30th.

-B

 

[BranMuffinBear]

Hello everyone,

I had my neuro appointment this morning. My blood work, EEG, and MRI all came back negative. I do not have written EMG/NCV results but I will do my best to tell what happened. I will post the actual EMG/NCV results when I receive them.

During the NCV my neuro said that I had reduced nerve conductivity through the ulnar nerve at the elbow of my right arm and briefly mentioned carpal tunnel syndrome but did not elaborate further other than to recommend that I do not put direct weight on my elbow. He also said that I have the same reduced ulnar nerve conductivity in my left arm.

According to the doctor, my EMG was okay but I had some concerns that I would like other opinions on. He said there was no fibrillation or PSW but when he left the needle in my right bicep there were about 8 individual intermittent pops during a 60-second interval. My neuro said that these were fasciculations related to my persistent twitching and that these were nothing to worry about. He then said that he is 90% sure that I have BFS. I go back next week to do another EMG on my lower extremities.

Logically, I should be 90% relieved and 10% worried but my anxiety has gotten the better of me ever since I've left. I guess I was hoping for a more concrete diagnosis. I read today that fasciculation potentials are considered a signal of denervation and a potential sign of ALS.

Am I right to be concerned about this? I feel like I'm going nuts. Is there any way to get a solid diagnosis other than just 90% sure?

 

[affected]

Every member here would love that result - please believe your doctor or go tell them how your anxiety has spiked so they can help you.

You truly should be thrilled with this result!

 

[lgelb]

Fascics in the absence of PSWs and fibs are not anything to worry about in regard to ALS. Rejoice.