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Neurology (Expert Forum)
Possible ALS
Answered by
Cleveland Clinic, MD - Neurology
Cleveland Clinic
Cleveland - OH
This forum is for questions and support regarding neurology issues such as: Alzheimer's Disease, ALS, Autism, Brain Cancer, Cerebral Palsy, Chronic Pain, Epilepsy, Fibromyalgia, Headaches, MS, Neuralgia, Neuropathy, Parkinson's Disease, RSD, Sleep Disorders, Stroke, Traumatic Brain Injury
Possible ALS
by Innersound, Jun 12, 2007 12:00AM
Felt fine in June of 2006. Then I felt a general weakness the next month. I'm a bicycle rider, that takes rides over 120 miles. My legs (the left being weaker that my right) became stiff, and progressively weaker. I could not ride my bike anymore. About three months later, I started to have fasciculations in my back and legs. Lost over 30 pounds in the last year, and food does not taste as good as it did before this started. I tried to regain my strength by riding a stationary bike, push ups, and lifting weights. But it did not make me stronger, just weaker. Now walking is very difficult, and I have fell two times. I notice that it is harder to breath, and I have a nasal voice. I sometimes choke on food, and pills. Now my arms are getting weaker, as well as my hands. I have trouble with back pain, because my back is so weak. Having trouble sleeping, even with sleeping pills. I'm losing about 300 hairs a day, and can't drive my car anymore. Was tested for MG, Stiffman syndrome, and all the standard blood tests. My doctor is going to test me for Wilson's disease, and give me a NVC/EMG test. I've gone downhill the last three months, and I never have a day where I feel stronger, all ways weaker. I'm real afraid I have ALS.
Doctor's Answer
by Cleveland Clinic, MD, Oct 16, 2007 10:55AM
, Oct 16, 2007 10:55AM
I am happy to address the questions that you pose, although it is important that you recognize that my impression is based entirely on the information you have provided in your posting and is by no means a replacement for an office visit with a neurologist. Diagnosis is contingent on detailed history and physical exam and as such, the following information should be considered solely for educational purposes.
Your symptoms include the followinh:
. Progressive muscle weakness (both upper and lower extremities) that resulted in difficulty performing simple tasks like walking, using hands, and that resulted in falls
. Muscle fasciculations
. Difficulty swallowing, breathing
. Change in voice and taste
. Significant weight loss
These symptoms represent involvement of peripheral muscles as well as bulbar muscles and possibly respiratory muscles. Based only on your symptoms, you have features of lower motor neuron (LMN) involvement that means process involving peripheral nervous system. But you might also have features of upper motor neuron disease (UMN), on your examination (like increase muscle tone and brisk muscle reflexes). the only way to identify that is through thorough neurological examination.
Your symptoms are concerning for motor neuron disease, a spectrum of conditions that include ALS, and other less common diseases. At the same time you had lost 30 pounds, sometimes weight loss is a result of muscle atrophy, but it might caused by another underlying condition (like paraneoplastic syndrome in which there is an underlying malignancy causing the weight loss and neurological symptoms).
I strongly suggest seeing a neuromuscular specialist who can do a targeted evaluation to identify the underlying condition. workup will likely inculde some blood tests, and most importantly an electrodiagnostic testing (EMG) done with a special protocol to look for evidence of motor neuron disease.
Thanks for using the forum. Good luck
Your symptoms include the followinh:
. Progressive muscle weakness (both upper and lower extremities) that resulted in difficulty performing simple tasks like walking, using hands, and that resulted in falls
. Muscle fasciculations
. Difficulty swallowing, breathing
. Change in voice and taste
. Significant weight loss
These symptoms represent involvement of peripheral muscles as well as bulbar muscles and possibly respiratory muscles. Based only on your symptoms, you have features of lower motor neuron (LMN) involvement that means process involving peripheral nervous system. But you might also have features of upper motor neuron disease (UMN), on your examination (like increase muscle tone and brisk muscle reflexes). the only way to identify that is through thorough neurological examination.
Your symptoms are concerning for motor neuron disease, a spectrum of conditions that include ALS, and other less common diseases. At the same time you had lost 30 pounds, sometimes weight loss is a result of muscle atrophy, but it might caused by another underlying condition (like paraneoplastic syndrome in which there is an underlying malignancy causing the weight loss and neurological symptoms).
I strongly suggest seeing a neuromuscular specialist who can do a targeted evaluation to identify the underlying condition. workup will likely inculde some blood tests, and most importantly an electrodiagnostic testing (EMG) done with a special protocol to look for evidence of motor neuron disease.
Thanks for using the forum. Good luck
Many people that get very concerned with ALS are in fact suffering from delayed onset of neurological intoxications caused by drugs. Cipro and levaquin for instance cause in a vast number of people, fasculations, muscle weakness, atrophy, neurological pains, etc. Two years ago, all the package inserts of this class of antibiotics have a warning of IRREVERSIBLE NEUROLOGICAL CONDITIONS caused by them. They are not rare at all, and they tend to be irreversible and permanent in some cases, but the majority of persons heal slowly over the years, provided that they do get re-exposed.
Once the drug factor is discarded, the search can be centered in more common ethiologies (causes).
Sounds like it would be worth seeing a neurologist to clarify if they see any muscle wasting or sensory deficits and have an EMG test, presumably they have done a brain scan etc?
Did anyone look for a myositis? Thats an inflammation of the muscles, there are some muscle enzyme markers that are commonly elevated when you become acutely unwell - one of mine was 7 times normal as I recall and an internist diagnosed me with inclusion body myositis, however it is really hard to be sure, my adrenals were knocked out by the steroids (also a treatment for myositis) I was given to treat serious shortness of breath and I had a concurrent cardiomyopathy and National Jewish diagnosed me in retrospect with a pulmonary embolism (I was 6 wks post partum when I got sick), so I am not totally convinced of the IBM diagnosis. I am still having days when its hard to lift my arms above my head to wash my hair, but they do correlate with low levels of cortisol. I am still taking steroids.
My hospitalist was convinced I had myasthenia gravis and I was as sure I did not have MG or MS (her other bet). The neurologist is still puzzled, 18mths on. They did find a brain tumor which they believe to be benign in my pineal gland. I also had trouble with fatigue of my muscles while I was eating/chewing food for a few mths.
I hope you get some answers soon. Don't hold your breath for a reply here from the neuro, s/he is not responding to Q's right now due to lack of time. At least that is what the forum administrators told me when I emailed them last wk to ask what was happening with the board.
Fiona