Attention veterans and/or well-versed: Questions

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Attention veterans and/or well-versed: Questions

Postby misterjuanperalta on August 29th, 2014, 4:24 pm

Hi,

Three questions for the veterans and/or well-versed in the subject(s).

1. Could BFS or BCFS manifest only in a few areas, or must it be widespread?
(I know tongue twitching does not always manifest.)

2. Does *** always start at the furthest extremity (ex: foot, hand)? Or can it present anywhere else first?

3. Is it required to consult various specialists? Would basic evaluations and EMG/NCS by a neurologist be adequate?
(I know ALS is not detected in an MRI or Lumbar puncture.)

Thanks for any input.

Regards.
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Re: Attention veterans and/or well-versed: Questions

Postby Yuliasir on August 29th, 2014, 11:16 pm

Hi,
usually benign fascics are first concentrated on certain areas (thumb, calf, eye, whatever) and in the most of cases then soon become more or less widespread, but still within clear foci - widespread does nto mean your whole body is twitching, it means you find more and more focal twitching in various limbs and regions/

yes typical ALS has ascending nature (from distal to proximal muscles, ie. from foot to tigh and from fingers to shoulder). Never heard about the case when tight would be paralysed while foot still operational - in ALS, becasue certain MND seem to be of descending nature and paralysis comes in a vice versa order.

for MND exclusion you need to consult neurologist, and, depending on the results of consultation, have NCS/EMG or MRI to exclude MS. But becasue of fascics may be result of at least endocrine and/or intestinal problems, you may see also endo and gastroenterologist (to exclude Gyllian-Barre syndrom if I do not mess anything, especially spelling of this disease - it manifests not only MND-like muscle weakening, but also with constantly elevated bilirubine level).
Many of the fellows (most of them) also would benefit from psychologist and/or psychiatrist consultation becasue BFS includes GAD-like component, very strong, and I personally do not know what is the reason and what is the cause - I am GAD since 6 yo, but many fellows who had no sign of GAD according to their statements report abrupt and striking development of unusual anxiety after having twitches (unusual for ALS people by the way) - so it is quite possible that unknown agen or combination causing benign twitches also causes physical changes in the brain resulting in acute anxiety disorder attack. This has to be treated as a real disorder then (and it is good becasue it is treatable).
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Re: Attention veterans and/or well-versed: Questions

Postby wjjw on August 31st, 2014, 12:16 pm

misterjuanperalta wrote:1. Could BFS or BCFS manifest only in a few areas, or must it be widespread?

While it has tendencies to be widespread, there have certainly been people reporting it just in a few areas or hotspots, even primarily one-sided. It could also start in one area but later migrate. If you had twitching in one single focal area though, it might be more likely to be a local nerve entrapment, irritation, etc.

misterjuanperalta wrote:2. Does *** always start at the furthest extremity (ex: foot, hand)? Or can it present anywhere else first?

It can present anywhere.


misterjuanperalta wrote:3. Is it required to consult various specialists? Would basic evaluations and EMG/NCS by a neurologist be adequate?
(I know ALS is not detected in an MRI or Lumbar puncture.)

That depends on what you mean by "required." My personal opinion is that if you have no weakness or other serious neurological deficits other than twitching and all the other common symptoms characterized in "BFS in a Nutshell," then you may not need anything other than a basic exam by a qualified doctor, unless the condition is so severe that it interferes with your daily life (e.g. people with Neuromyotonia may need symptom alleviating drugs). It is people who have other serious neurological deficits that need to go down the path of seeing specialists to have serious conditions ruled out. In 9 years on this forum I can't recall a single instance where someone with BFS actually had a cause for the condition identified and succesfully treated. It's pretty much getting a doctor to give an official diagnosis of BFS, which may give some people peace of mind, and others continue to worry indefinitely and unnecessarily, like for many years.

Cheers,
Bill
A knowledge of the existence of something we cannot penetrate, of the manifestations of the profoundest reason and the most radiant beauty, which are only accessible to our reason in their most elementary forms--Albert Einstein
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Re: Attention veterans and/or well-versed: Questions

Postby misterjuanperalta on August 31st, 2014, 1:04 pm

Thank you.
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