Als?

[Alaroc]

Hello, I am very nervous about my symptoms lining up with ALS. I'm hoping talking with pAls and others here will calm my mind. I'm running my mind ragged with these thoughts and constant searches online.

• 
  28 y/o
  Male
  Short 1-2 pulse twitching for last 2-3 weeks(calves,quad,glutes,back,bicep,tricep,wrist, arch of foot)
  Twitching happens only noticeably at rest.
  Hyperreflexia in knees
  Lower reflexes in elbows(I personally think my rolled sleeves interfered here)
  No Family History

Doctor visits started with odd feeling in left foot and leg.(Particularly feeling odd after a walk on the treadmill) Then twitching in my quad one day from 6am to 3pm sent me to a neurologist for an EMG(both arms and left leg). It came back clean and he said no ALS. After reading more online and more twitching I had a visit with a second neurologist who did the exam who only found hyperreflexia.

No clinical weakness but potentially perceived fatigue in right forearm/calves but this comes and goes with rest. No problems swallowing or UMD symptoms other than potentially hyperreflexia. ( I could have sworn my knees always reacted that way) I purposely take the stairs to my office 3rd floor to see if I feel any weakness.

Blood tests have ruled out lyme and vitamin deficiencies (based on US standards at least). Thyroid tested low but within normal ranges. MRI was done on Tuesday and I'm waiting on results. I thought I had trouble with the heat out at the fair and balance I can't tell if it is in my head or not if any changes have happened.

Extremely worried, I'm trying to hold on to that twitching body wide at this young of age with a clean EMG and no clinical weakness points to a very low probability. It's still been extremely hard to stop thinking about.

 

[Atsugi]

No ALS. Not even close.


There is no "odd feeling" or "fatigue" and it certainly doesn't come and og with rest.



Twitching "all over" is not ALS, either.


Heat and balance? Nothing to do with ALS.


Believe your doctor.

 

[Alaroc]

Hey Atsugi,

thank you for the quick reply. This helps me put this aside but would your answer stay the same if I were to say that the heat/balance was in my mind and I am not sure if the odd sensation in my left foot is still there? I'm sure the odd sensation was there at first (2+ months ago).

Leaving me with:
Slight perceived fatigue in calves/forearm (nothing close to clinical weakness, and forearm feels better in the mornings)
Twitching all over body
Hyperreflexia in knee

The first neurologist who did the EMG said definitely not ALS (2 weeks ago, and this was after the start of the twitching that had gone from 6am - 3pm). The second neurologist who did the clinical exam said she didn't think it was ALS ("I'm 80% sure it isn't ALS" -2nd Neuro). I'm hoping the 80% sure was something to cover herself in the very small likelihood it could be. Top of her list were demyelinating diseases.

Best Regards.

 

[Lkaibel]

Was the second Neuro a Neuromuscular specialist? From where I sit, the "80%" thing sounds like someone who did not know much. You got a "definitely not ALS" from the first one because your EMG did NOT show active and chronic denervation, usually in combination with short wave abnormalities. Hyperflexia in a single joint (which may well have been there from birth), twitching, and "slight perceived fatigue" in arms and calves do not ALS make, not even close.

ALS is one thing that frankly MOST Doctors don't know much about, and the crazy thing is you hear clueless observations even from Neurologists who are not specialists in the disease/related diseases. I'd bet a paycheck this has nothing whatsoever to do with ALS.

 

[KimT]

This might help you put it in perspective.

My ALS neurologist has constant twitching in his legs AND brisk reflexes. He isn't even concerned enough to order an EMG. Brisk reflexes, especially bilaterally are extremely common in the general population and seem to be even more common in anxious people.

Nothing you posted sounds remotely like ALS.

The normal EMG ruled it out for you.

Get enough restful sleep, stay hydrated, maybe get some blood work to check B-12 and D, along with routine. Then enjoy life! You don't have to be here and we're all happy for you.

 

[Atsugi]

AL,
No ALS.

 

[lgelb]

Intolerance to heat and loss of balance can be associated with MS, but the MRI should illuminate if that is a possibility.

Agreed, nothing is "lining up" with ALS.

 

[Alaroc]

I just wanted to thank everyone for the responses. It really means a lot to me and this forum has been the best resource for me to read symptoms from the sticky and hear people who are well informed. I got my MRI results back Thursday, which were clean. The neurologist has revised to nothing points to ALS or MS at this moment. I have an appointment the 11th next month to check for any progressive weakness/other symptoms. A lot of the anxiety has dropped and the twitching has maybe reduced(too early to say). I have been advised to seek help for the anxiety which I plan to do. There is still a small inkling of concern for the weird fatigue in my right arm from driving or cutting a deep dish pizza with a fork that this is a slow progressive weakness.

I'm going to assume it's in my mind from anxiety until I can't do something or a neurologist tells me otherwise.

Thank you again everyone.

Best Regards,
R

 

[lgelb]

Sounds like a plan. Thanks for updating us -- it helps reassure others.

Best,
Laurie