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Waiting

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Diagnosis
08/2012
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Kansas
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Independence
My husband has been told by his neurologist that he thinks he has Inclusion Body Myositis, primarily based on his muscle biopsy. Prior to that he was leaning toward ALS, but he didn't tell us that until after the biopsy came back. He wants him to have a second opinion at Barns Jewish in St. Louis. We are waiting for the appointment to be set. In the mean time he continues to have fasciculations all over and daily. Some are you can see, some you can't. He has loss of strength in arms, legs, and hands. He has atrophy in his arms most noticable in the triceps. My question is, are fasciculations a symptom of Inclusion Body Myositis? The only thing I'm finding is that "Motor neuron disorders can be distinguished from IBM by the presence of hyperreflexia, cramps, fasciculations and large motor units on EMG". His needle EMG did not detect the fasciculations but they have increased since that time and I have read the the needle EMG doesn't detect fasciculations as well as a non-needle EMG. Any comments would be appriciated.
 
This worries me because I believe I had the needle EMG, something was prodded inside areas. I had this done also at Barnes Jewish. Any info from those that have knowledge?
 
Yes, you can have fasciculations with inclusion body myositis.

A non-needle EMG has its advantages but I can assure you that a needle EMG will be able to detect fasciculations if they are present. Furthermore, there is a lot more data than just fasciculations that the EMG compiles and I'm sure that the data collected by your neuro were sufficient to arrive at the proper diagnosis. Larry, you can rest assured.
 
Thanks Wright. That makes me feel better.
 
Edward,
How long is it taking you to get in to Barns Jewish? We are still waiting for the appointment date to be given.
 
Referred May 22, appointment was July 27th-long wait it appears but maybe not.
 
Larry,
I think I read a post that you are going back in November to BJ. Will that be your second visit? Did they repeat a biopsy during your visit in July? My husband doesn't want to have a repeat biopsy but if it's necessary to confirm IBM I think he should do it. He is generally the anxious one in our house but I am more fearful of getting the diagnosed wrong than he is. Our local neurologist isn't 100% that it's IBM but fairly confident.
 
I am posting on your "wall" so to speak. I am afraid others will not like me posting here in the general forum. See your message there.
 
I was positive for fasciculations in several areas on my emg but doc is leaning toward a muscle issue and away from a mnd, so yes, they can occur in myopathies. IBM was essentially ruled out in my case because I'm a bit young for it.
 
My husband is young for IBM too. He's only 42. That is part of what is feeding into my skepticism.
 
I have some features of motor neuron disease, but because of my young age (33) and the way my symptoms are presenting (fairly symmetrical, respiratory muscle involvement early on, symptoms appearing somewhat simultaneously in multiple areas of the body) they're leaning away from an MND and more toward something called mitochondrial myopathy. I'm not exactly convinced yet, but I'm comforted that my presentation is unusual. It gives me hope this is indeed something treatable or less devastating than ALS. The muscle biopsy is the next step for me. WIshing you and your husband all the best. Just remember, ALS is still a fairly rare disease, especially at your husband's age.
 
My last reply to you went to moderation ...
 
Thanks Luke. I hear IBM is even more rare than ALS and the average age is 60 for IBM. I think ALS is 50.
 
That sounds right, from what I've read and discussed with my doctor. What's next for you guys, testing-wise?
 
Luke,
I'm not sure if there will be more testing. We are still waiting to be assigned an appointment date at Barns Jewish. I don't know if they will want to repeat some of what has already been done or if they will feel confident enough to just confirm the IBM diagnosed with out additional testing.
 
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