Here are some reassuring posts I found...

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Here are some reassuring posts I found...

Postby Guest on December 8th, 2002, 10:07 pm

I found these on a neuro site for ALS questions answered by the Cleaveland Clinic. I know others go over there, because I have seen posts from there posted over here, but for those who haven't seen these, I thought I would post them over here. I think they should be reassuring, I just have to make myself believe them. Sometimes it seems harder to believe the obvious and positive than it is to believe the negative horrible things! I feel as though even intellectually I know it is near impossible to have it without weakness it is harder to believe that than I have a horrible RARE disease that Usually only strikes people 15 years older than me. UGHHHH!
without further rambaling, here is what I found...

"The EMG should find abnormalities, IF present, when muscle fasciculations are pathological. This is because, fasciculations only occur late in pathological diseases and therefore the process should and is always present by the time they appear. I have never seen a report where the EMG has been normal and the patient has ALS. This would not be the case in benign fasciculations because they do not occur due to observed abnormal pathology."

"yes muscle weakness must accompany fasciculations to be ALS. It is part of the pathophysiology of the disease, as the anterior horn cells die, they cause the muscle to slowly die and give off fasciculations. The EMG is always positive in ALS, however, the extent of the lesions can vary between patients. I do not understand what the postings were concerning so it is difficult to comment. Have have seen both types of cases, either starting in a particular area or generalized with ALS. I would not give any absolutes as far as fasciculation areas at onset. With ALS, by the time the fasciculations begin there is muscle weakness and in many cases cramping. The EMG is positive for sharps and fibrillations. I hope I have answered some of your questions"

QUESTION
"5 Do random jerks of fingers, arms, mouth signal ALS?"
ANSWER
"5.No"

"Dear Dan:

Fasciculations caused by ALS are due to dying muscle tissue (actually necrotic). So, fasciculations due to ALS are always accompanied by muscle weakness and EMG changes. Benign fasciculation are not due to dying muscle tissue, but irritated muscle membranes. They are not accompanied by muscle weakness, nor are there EMG changes. Fasciculations can be seen in a number of diseases, such as nemaline rod myopathy. So, if there is muscle weakness with EMG changes, then fasciculations are due to a specific disease. When they occur in isolation, they are usually of the benign variety. Any and every neurologist will tell you this.

Whether they occur in specific areas of the muscle is variable. In ALS they can begin in any muscle but usually it is the leg, but it can be the bulbar muscles, arms, etc. This will vary in a particular patient. Since muscle is not dying in benign fasciculations, they tend to be spread out and in a variety of muscle groups. In the early part of ALS they tend to be in specific muscles, more distinct, because the muscle is dying. The literature indicates that benign fasciculations are usually more spread between muscle groups and can worsen with anxiety and fatigue. They can reoccur in the same muscle groups and also be variable."

QUESTION:
"4-WEAKNESS WITH ALS IS NOT MINOR AND PROGRESSES RELENTLESSLY.?"
ANSWER:
"4.Yes"

"Although fasiculations are a characteristic part of ALS, they are also found in other states and can be associated with a benign disorder. Typically, patients with Als are older than 50 years (not 21!). There are childhood and juvnenile forms of motor neuron disease (which mimic ALS but these are often hereditary). If you do not have any associated weakness or wasting, the fasiculations are probably benign."

"The problem with answering a question like this is that many of the symptoms of ALS overlap with other neurologic problems, and if you don't take a systematic approach it is possible to convince yourself that you have the disease based on a few symptoms."
"Usually, ALS presents with asymmetric weakness, often starting in one limb. There isn't much in the way of numbness per se. Weakness may be subtle at first. Sometimes the weakness appears first in the speaking and swallowing muscles before affecting limbs.

"Yes, fasciculations can be a sign of ALS. But they can also be a sign of lots of other processes, such as focal nerve injuries. Don't forget that fasciculations can also be "normal."

"Of course, many people think ALS when they see fasciculations, but more commonly there is a different cause. In young people such as yourself, the most likely cause is "benign fasciculations" - that is, normal."

"Some of the symptoms you have (vibrating, bubbling sensations, etc) are not related to the fasciculations. They are NOT symptoms of ALS, which is a motor disease. In my experience, most people with these symptoms are found to have underlying anxiety. I can't say whether the anxiety is primary (that is, no apparent cause) or secondary (because you are worried about the other symptoms). Many people with anxiety-related symptoms do not experience the usual sensation of anxiety and it may come as a surprise."

". Tongue fasiculations are not a more specific indicator of ALS. "

"Fasiculations in ALS are manifest after denervation (muscle losing its nerve supply) due to injury of the anterior horn cell ( part of the spinal cord). They develop in muscles that are weak.. ALS is a progressive disorder therefore, as more muscle become weak more fasicualtions appear. Of course, some days may be variable with regard to the number of fasciculations (but always present). "

"There would have to be ongoing disease of some time (5-10 months) before one sees obvious fascicualtions and therefore by now, you would have epxressed the neurological exam findings of profound muscle weakness. "

"The normal neurological exam, no muscle weakness with your fasciculations pretty much rules out ALS."

If anyone is still reading this, I hope this helps, there are a million more quotes I can post if you find this helpful, though now my husband is threatening to take my keyboard so I better run. Let me know if ya want more. BTW, every quote on here is from a neuro at the CLeaveland Clinic, though the entire post was not always posted, nothing was changed reworded, altered, etc. Reading this stuff seems to help me some. Though the worry is definently still there, I hope it will lessen with time. :D
Liz
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Postby SusanSid on December 9th, 2002, 12:48 am

Liz,
Thanks for taking the time to share your posts. They are helpful. Thanks again.
Sue
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Postby dwl on December 9th, 2002, 7:41 am

Thanks for all your work, Liz. It's all VERY reassuring. I guess that many people here are still worried in spite of negative EMG's and more than one neuro opinion - I know I was!

I've wasted a good few months of my life worrying about whether I had weakness of my hand/foot because I had rubbery feelings in the muscles along with my fascics. Needless to say, the symptoms have pretty much settled. I would therefore like to add to your posting - in ALS/MND, your muscles will not just feel weak, they ARE weak. There is obviously a world of difference.

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Postby Arron on December 9th, 2002, 11:22 am

Dynomite work Liz! That should help re-enforce what we've been saying all along on here and it isn't coming from "someone's" opinion, it is all coming from a VERY qualified neuro. That post of yours should be added to my post at the top of each page where it says, "BFS in a nutshell" so people can access it and/or we can access it for easy future references and pointing people in the right direction. Again, great work. I KNOW it will help people.
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Postby Joanne on December 9th, 2002, 12:34 pm

Thanks for your hard work and input.....it is always reassuring to read stuff like that!!!!
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