I am asking about my husband, who is having a lot of issues and now has an abnormal EMG. Like Claire, I've read other posts and the stickies. I apologize for the long post.
We see a neurologist next week about the abnormal EMG and I am hoping for guidance on what to expect if ALS is a possibility, what questions to ask, what tests should we ask for, and when is it a good time to see the ALS specialist to get a more definitive diagnosis if needed (there is one clinic in my state, but it is not very convenient). My biggest concern is that my husband sees a lot of specialists but I don't think any one of them is looking at the big picture. I am asking for advice on what to do about that also.
In our state, a technician performs the EMG/NCS. He told my husband that although the EMG did not fit all the criteria for ALS, that it was very concerning and he wouldn't rule out ALS. On the other hand, he is not a neurologist but a specially trained technician. The summary of his long report is "Axonal and demyelinating, sensorimotor, symmetrical, distal>proximal, poly neuropathic disease process involving the BUE and LE. An underlying, upper motor neuron pathology cannot be ruled out at this time. Clinical evaluation and the widespread muscle wasting suggest additional pathology in the presence of the neuropathic disease."
Based on reading your forums, I see that diagnosing ALS is not trivial.
To make things complicated, my husband has other things going on that could also have neurological effects such as diabetes (which would explain his abnormal NCS and neuropathy), normal pressure hydrocephalus (he has had a shunt for 10 years), and a severe herniated lumbar disc (he has had several series of shots in his spine for this). He also has kidney disease, mild congestive heart failure, and a severe heart block (which resulted in several cardiac arrests and now he has a pacemaker). On top of all this, his chest x-ray/PET scan recently showed abnormal nodules in the cavity outside of his lungs, and he had a biopsy done to hopefully rule out mesothelioma cancer. He sees the pulmonologist this week also to get the results of the biopsy.
The intent of the EMG was to rule out issues with his spine. The EMG technician does not feel that there is evidence of problems originating with his spine at this time. His cervical x ray was normal.
Currently, he is having a great deal of trouble with walking, balance, grasping and generally is experiencing a great deal of weakness. He has had problems, off and on, with weakness, balance and walking for several years. At those times the physicians felt that they were due to the neuropathy from the diabetes, the herniated disk and the normal pressure hydrocephalus. As of last summer after he got his pacemaker, he had improved to walking with just a cane and could walk up to a mile. Now he is using a walker and he can barely walk. His ankles and knees collapse inwards as he tries to walk, which is new this year. I feel that his speech is somewhat slurred, but he is not experiencing difficulties with swallowing. The problem with grasping is new. He is having trouble opening jars, etc and is dropping things due to weakness.
His neuropathy is causing numbness and tingling, but he is not experiencing muscle pain.
As we try to track down his issues and get them addressed, I feel that each doctor just points us to the next specialist. I would like to make the best use of this appointment with the neurologist.
Any suggestions would be appreciated.
We see a neurologist next week about the abnormal EMG and I am hoping for guidance on what to expect if ALS is a possibility, what questions to ask, what tests should we ask for, and when is it a good time to see the ALS specialist to get a more definitive diagnosis if needed (there is one clinic in my state, but it is not very convenient). My biggest concern is that my husband sees a lot of specialists but I don't think any one of them is looking at the big picture. I am asking for advice on what to do about that also.
In our state, a technician performs the EMG/NCS. He told my husband that although the EMG did not fit all the criteria for ALS, that it was very concerning and he wouldn't rule out ALS. On the other hand, he is not a neurologist but a specially trained technician. The summary of his long report is "Axonal and demyelinating, sensorimotor, symmetrical, distal>proximal, poly neuropathic disease process involving the BUE and LE. An underlying, upper motor neuron pathology cannot be ruled out at this time. Clinical evaluation and the widespread muscle wasting suggest additional pathology in the presence of the neuropathic disease."
Based on reading your forums, I see that diagnosing ALS is not trivial.
To make things complicated, my husband has other things going on that could also have neurological effects such as diabetes (which would explain his abnormal NCS and neuropathy), normal pressure hydrocephalus (he has had a shunt for 10 years), and a severe herniated lumbar disc (he has had several series of shots in his spine for this). He also has kidney disease, mild congestive heart failure, and a severe heart block (which resulted in several cardiac arrests and now he has a pacemaker). On top of all this, his chest x-ray/PET scan recently showed abnormal nodules in the cavity outside of his lungs, and he had a biopsy done to hopefully rule out mesothelioma cancer. He sees the pulmonologist this week also to get the results of the biopsy.
The intent of the EMG was to rule out issues with his spine. The EMG technician does not feel that there is evidence of problems originating with his spine at this time. His cervical x ray was normal.
Currently, he is having a great deal of trouble with walking, balance, grasping and generally is experiencing a great deal of weakness. He has had problems, off and on, with weakness, balance and walking for several years. At those times the physicians felt that they were due to the neuropathy from the diabetes, the herniated disk and the normal pressure hydrocephalus. As of last summer after he got his pacemaker, he had improved to walking with just a cane and could walk up to a mile. Now he is using a walker and he can barely walk. His ankles and knees collapse inwards as he tries to walk, which is new this year. I feel that his speech is somewhat slurred, but he is not experiencing difficulties with swallowing. The problem with grasping is new. He is having trouble opening jars, etc and is dropping things due to weakness.
His neuropathy is causing numbness and tingling, but he is not experiencing muscle pain.
As we try to track down his issues and get them addressed, I feel that each doctor just points us to the next specialist. I would like to make the best use of this appointment with the neurologist.
Any suggestions would be appreciated.
