Dear mjarosz1,
I apologize for the delay in getting a response from a physician.
Thank you for submitting your question.
I will answer your concerns to the best of my abilities, but please be informed that I am unable to offer a diagnosis based on your history and list of symptoms.
I am limited in not having the opportunity to perform a full neurologic examination on you, nor am I able to review the pertinent imaging.
This is solely for educational purposes and should in no way be a substitute for a formal evaluation by a certified physician.
To begin, allow me to give you a brief educational segment on ALS.
Amyotrophic lateral sclerosis, or ALS, is a disease of the nerve cells in the brain and spinal cord that are responsible for voluntary muscle movement.
ALS is also known as Lou Gehrig's disease.
In ALS, nerve cells (neurons) waste away or die, and can no longer send messages to muscles. This eventually leads to muscle weakening, twitching, and an inability to move the arms, legs, and body. The condition slowly gets worse. When the muscles in the chest area stop working, it becomes hard or impossible to breathe on one's own. Persons with ALS eventually need a breathing machine.
ALS affects approximately 1 out of every 100,000 people.
Except for having a family member who has a hereditary form of the disease, there are no known risk factors.
Symptoms usually do not develop until after age 50. Persons with ALS have a loss of muscle strength and coordination that eventually gets worse (is progressive). This eventually makes the person unable to do routine activities, such as going up steps, getting out of a chair, or swallowing. Occasionally, breathing or swallowing muscles may be the first muscles affected.
As the disease gets worse, more muscle groups develop problems. However, ALS does not affect the senses (sight, smell, taste, hearing, touch) and it usually does not impact a person's ability to think or reason.
Symptoms include:
Muscle weakness, decrease in muscle strength and coordination
Slowly starts
Slowly gets worse
Commonly involves one limb at first, such as the hand
Eventually, person has difficulty lifting, climbing stairs, and walking
Paralysis
Muscle cramps
Voice changes, hoarseness
Speech problems, such as a slow or abnormal speech pattern
Difficulty swallowing, gags or chokes easily
Difficulty breathing (increasing effort required to breathe)
Head drop due to weak spinal and neck muscles
Additional symptoms that may be associated with this disease:
Muscle contractions
Muscle spasms
Muscle atrophy
Ankle, feet, and leg swelling
Weight loss
Drooling
In reading your comments, I know that you have some symptoms that may fall in the above list, but I have a very low suspicion that you have ALS for multiple reasons.
#1 -- you age; as noted above, people usually develop ALS after the age of 50; I have yet to meet a patient <45 with a diagnosis of ALS; my youngest pt is 47 and has two first degree relatives with ALS (you don't have a family history)
#2 -- the constellation of your symptoms do not fit the criteria for ALS.
#3 -- your normal EMG and MRI sway against ALS
It is reassuring to hear that you have been evaluated by two neurologists.
All in all, I think my role here is to give you reassurance that ALS is unlikely in your case. In fact, BFS is more likely.
Please do not over-worry about things, especially because you are pregnant and close to delivering.
Continue to follow up with your neurologists.
You are more than welcome to see a neurologist here at the Cleveland Clinic, but I do feel confident (based on your previous work-up) that you are in good hands.
Hope this help,
Best of luck and congrats with your new baby,
JKL, M.D.
I've got this sensitive pain to touch feeling on my left lower arm down to my wrist a third of the way from my elbow on the inside of my arm
ALS symptoms can occur quickly and a small percentage of PALS do develop some type neuropathy...
I have been through something similar, I don't think you have ALS. I spent a lot of time talking to my Neurologist about ALS and he assured me I don't have it. I had a friend who died from it also. The key with ALS is profound muscle weakness, twitching muscles are 90% of the time totally benign and acute.
You are a lot like me, worrying and worrying, but I am almost sure you don't have ALS.
My Nuero said a lot of time BFS can be caused by diet, cafiene, stress and medication.
I also want to add that I seen my neuro and he performed a Nerve velocity test where the dent was. He said the dent was on my peroneal nerve and it looked to be injured. When he performed the test the the test from the knee to the injured spot was a just a pinch slower then the from the injured spot to my ankle. He said it should be a little faster. When I asked him if he thought it could be ALS, he so no. He asked if I crossed my legs and I do on that side a lot and he thought it was probably due to that. Well after examing my legs all the time I notice that my muscles in my right legs seem to be smaller than the left, though I'm not weak. Is this normal to have one leg muscles bigger. But when I measure, my right leg it a little bigger which doesn't make sence to me. Also, if I have ture atrophy would I be experiencing weakness at this point. I just went a walked a mile yesterday without any trouble. I also want to add that I'm 38 weeks pregnant. Thanks!!
I posted this about two months ago and haven't received a responce from the doctor. Is that pretty normal.