Old 09-26-2016, 04:14 PM #1 (permalink)
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Default Saw my neuromuscular specialist today - new concern. Questions.

I last posted here a couple of years ago. I am the person who had a long standing diagnosis of myopathy which had not progressed, unlike others in my family with MD then I developed fasiculations and was concerned. I had an emg which again showed myopathy and I left this forum. At that time, I had no reflexes below my knees. In the past six months, I have developed markedly brisk reflexes on my whole left side which is the side with atrophy. I have had marked progression of weakness but am still walking. Still have fasiculations but they are sporadic. Doc who is neuromuscular boarded and sees me in the MDA clinic now wants MRI of brain. Says to "call if I can't do something suddenly." Says it would be quite unusual for MD to be so asymmetric. Did not mention a repeat EMG. I am not in a hurry to get another. I had a fairly normal MRI of my neck a couple of years ago. Some mild arthritis but no one was excited about it so I doubt symptoms are from that. My question for you folks is am I right to be concerned about ALS? Not asking if I have it. Just wondering does it sound possible? Given the myopathy concerns, we've toyed with selling our house and building an accessible one. Now, I don't really know what to think. Of course, I suppose the other option is brain tumor but it would have to be pretty slow growing. Did you guys have MRI's of the brain done?
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Old 09-26-2016, 04:36 PM #2 (permalink)
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Default Re: Saw my neuromuscular specialist today - new concern. Questions.

Anything is possible I suppose. When you have another major neurological condition it makes things very complicated. I am glad you have a well qualified doctor.

Yes I think most of us have had brain mris. It is fairly usual. Occasionally there is an indication on mri that it is mnd but mostly they are done to rule out other things.

Did you discuss your concerns with the doctor? What did he say?do you have a plan to follow up after the mri?
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Old 09-26-2016, 05:04 PM #3 (permalink)
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Default Re: Saw my neuromuscular specialist today - new concern. Questions.

I tried to ask but he looked downright uncomfortable, said to be sure to call in a week after the MRI. In March, he told me to tell work that I had myopathy because it was progressing and people were asking why I was limping and not taking the stairs. Plus, I had to have accommodations at work. Now, he's saying he doesn't think it's MD but didn't say what he thought it was.
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