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Thursday, September 29, 2016
ALS vs MG
In mid 2006, my 60 yr old mother noticed generalized muscle weakness. In September/October 2006 she was referred to a Neurologist for a physical examination. The Doctor performed an MRI of the head/neck, EMG, physical exam,Lyme disease test and requested Acetycholine Receptor Antibody test. The MRI, Acetylcholine Receptor Antibody and lyme tests came back normal/negative. Based solely on the EMG and physical exams (tongue facticulations? and generalized limb weakness) the doctor diagnosed ALS on 10/31/2006.
One doctor suggested MG and prescribed Mestonin and the other two diagnosised ALS. This 2nd opinion was based on simply a physical exam and the results of the tests performed by the first Neurologist. NO further testing (Anti-Musk, Tensilon, Etc..)were performed.
In December 2006 my mother was taken was encouraged to enroll in a hyperberic chamber clinical test. By the end of December 2006, her movement was noticebly slower and she started to have more difficulty swallowing.
The clinical trial began after the first of the year. At that time she was encouraged not to seek any further testing or treatment until after the clinical study was concluded (several months were to be involved).
She started taking the Mestinon in early December and noticed some brief improved strength. By the end of the month she was advised that liver enzymes were elevated and she quit taking the Mestinon thinking it was causing this problem.
In February 2007, she was hospitalized while her doctors tried to determine why her body had dangerously low sodium and potassium levels. After laying in the hospital for three weeks she was sent home were she had no success in regaining any strength. The beginning of March she did start taking the Mestonin sporatically and claims she did notice improvements. Last week (March 25th)she was hospitalized again due to respiratory failure (in my opinion the failure was a result of poor nutrition since leaving the hospital the first time and high anxiety due to her difficulty swallowing/breathing)and put on a ventilator to help her breath. Wednesday they fitted her with a feeding button and since then she has regained some strength. Over the last few days her breathing has improved and they are monitoring her day by day to see if they might be able to send her home without performing a tracheostomy. She is day to day...
When I questioned the neuro last week about the Anti-Musk testing etc to further rule out MG, he confimed this test was never run and immediately ordered the test. When I asked why we could not try any treatments (Plasma Exchange, IVIG, Etc) I was told that these treatments have yet so show any positive effects and given the potential side effects, he would not recommend anything at this time...
I have tried to limit my involvement in my parents medical treatment but after last weekend`s set back and the rapid deterioration in her health, I am questioning the ALS diagnosis and whether we sould look for a 3rd opinion once she is stabilized...Before we ended up in the hospital last week, we had scheduled an appointment with a doctor who seemed to think something other than ALS was going on. This doctor claims to specialize in MG. What are your thoughts??? Are MG and ALS misdiagnosied with any frequency to where I should be concerned???
The foundation of an accurate diagnosis of either ALS or MG is a good history, physical exam, review of the patient’s imaging and EMG findings. When an experienced neuromuscular neurologist puts this information together, it is uncommon to confuse the two. MG does not cause increased reflexes, dramatic slowing of movements, or enlarged motor unit potentials on EMG. MG has a number of features (double vision, droopy eyelids) that are not seen in ALS. They also have many share features.
I hope that this helps somewhat as you face this difficult situation with your mother.
John G Quinlan, MD
Professor of Neurology
College of Medicine
University of Cincinnati