Confused

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Confused

Postby Moeman on March 7th, 2004, 9:27 pm

The following is a post I found on "MEDHELP". After reading several of the various posts I find this very confusing. Not so much the question, but the response by the Neuro. In almost all their replies they indicate "no weakness.... no ALS. I have also read on this forum, copy from NFN which indicates it doesn't matter which limp is tested by the EMG, it will present evidence of a disorder if present. I realize that I should avoid other sites but I have found Medhelp to be comforting until I read the following;

Thank you for this valuable forum! I am a 50 year old Man. Since the start of 2003 I have had Fasciculations in my arms, chest, back and some in my face and legs. I saw the neurologist in May & had MRI, full blood tests and an EMG. MRI was clear, CPK was slightly elevated at 208 and the EMG picked up the fasciculations but nothing else but I was never quite confident that the EMG was done with full diligence. The neuro made a diagnosis of Benign Fasciculation Syndrome but did do a test for Kennedy's Disease. Test came back negative. I started having cramps in arms & hands. I recently saw 2 drs at a nuro-genetic clinic in L.A. One observed what she thought was atrophy in my left side and they both agreed I needed a new EMG. I had that EMG two weeks ago and the doctor picked up the fasciculations AND fibrillations in both arms but no fibrillations in my legs/face. No conduction block was picked up. He ruled out BFS. The Dr. told me that if he had found fibrillations in one more extremity he would have made a dx of ALS then but since he did not he thought I might be in the early stages of ALS or have another disorder. An Antibody panel came back negative. I now go back to the Neuro-genetic clinic for whatever is next. Can you tell me what the alternative diseases could be at this point? What tests are left to do? While they are doing tests and waiting for outcomes along the way should I be doing something to ensure the slower progression of the disease in the event ALS is the final word? I'm concerned and anxious. Thanks.

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Answer Posted By: CCF-Neuro-M.D.-CS on Monday, November 17, 2003

Other areas which need to be tested and excluded include abnormalities within the spine. Either a compressive lesion within the cervical spine or a combination of problems within the cervical and lumbar spines could cause symptoms similar to ALS. Also, inflammatory disorders of the spine occasionally need to be excluded with imaging. Another disorder is primary lateral sclerosis which is similar to ALS, but only involves the nerves coming from the brain, and not the nerves coming from the spinal cord. Other disorders involving the muscles and diseases which preferentially involving the nerves coming from the spine, such as spinal muscular atrophy, need to be considered. Until the diagnosis of ALS is established I would not recommend a particular treatment. However, I would recommend having a visit at an ALS center to have the diagnosis confirmed, and to inquire as to the most recent treatment opitions, and research which is being performed. ALS centers also typically have a multidisciplinary team to address many different issues. Good luck.
Take care. Moeman
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Postby Jenn311 on March 7th, 2004, 10:26 pm

You're going to drive yourself crazy looking for reasons that you might have ALS. Accept your benign prognosis and get on with life. This guy might have some other diagnosis that is not ALS...my own mother has some disorder where her spinal cord is being compressed because of a build up of plaque that lines the inside of her spine. It took a long time to diagnose it....years in fact. She recently had surgery (a laminectomy) on part of her lower spine, still needs to get the cervical spine taken care of...but she had all sorts of neuro problems going on with her. ALS isn't the only diagnosis when people have an abnormal EMG...which, if I remember correctly, you haven't had. So stop driving yourself crazy! You'll thank yourself for it in the long run.

Wishing you peace,
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