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Old 05-13-2015, 06:46 PM #31
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Originally Posted by Ragtop262 View Post
A while back there was a thread about fasciculations, in which I posted a link to a study that did skin biopsies on a number of people with "benign fasciculations" - and found that a high percentage showed decreased nerve fiber density. The implication is that fasciculations were a essentially a symptom of small fiber neuropathy.

Since my symptoms started as fasciculations, I previously spent a bunch of time on a BFS forum. The people with benign fasciculation syndrome frequently complained about buzzing. (And, I occasionally feel some buzzing as well.)

The "official" symptoms listed on the BFS forum include: Frequent muscle twitches (fasciculations or fascics), generalized fatigue, "pins and needles" sensations, migrating numbness, muscle cramping and/or spasms in the affected areas (usually the feet and calves), muscle aches and stiffness exercise intolerance, headaches, and itchiness. Often the symptoms will get worse at night, or during periods of sickness or viral infections, stress, or overexertion.

Although they don't specifically list burning, pain, or buzzing - many of the members report those symptoms as well.

Then there's the other name for BFS: "Peripheral Nerve Hyperexcitability Syndrome".

Typical prescription treatments for BFS are anti-epileptics, antidepressants, and anti-spasmodics. Non-prescription treatments include epsom salt or dead sea salt soaks, dietary improvements, magnesium supplements, etc.

Any of this sound familiar?? After spending time researching both "conditions", I really wonder if BFS and SFN are really just slightly different manifestation of the same disease.
Is the BFS diagnosed by skin biopsy? It sounds pretty much like the same thing or maybe just one level below since it doesn't have the extreme shooting pain type of neuropathy.
It really sounds the same. Ive never heard of BFS.
This is interesting to me. I have always had hyperexitabliliy of my nervous system, but never this pain, spasms, twitching and autonomic dysfunction anything like this.
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Old 05-13-2015, 11:19 PM #32
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Ragtop,

I am familiar with the bfs forum. My first symptoms were twitching and vibrating and they lead to the bfs forum. It's actually how I heard of sfn. When I started to get more symptoms and in particular the burning I came across a few posters that ultimately received skin biopsies that confirmed sfn. Drs ( I think ) use it as a bail out. One neuro said I have bfs and refused to entertain the idea of sfn. As health girl pointed out bfs and sfn seem very similar. If they are so similar it seems ridiculous to me that neuros would put people in that category without biopsy to rule out sfn
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Old 05-14-2015, 05:19 AM #33
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I don't know what to make of this ( maybe it's even just coincidence). The areas that I rub my compounded cream on twitch, shake and vibrate less than normal. My cream has 10% Diclofenac and 2% amitriptyline. Diclofenac is an antiinfmammatory. Do u think my vibrating may be thousands of muscle spasms happening very quickly due to tight/tense or inflamed muscles? This symptom ( twitching and vibrating ) were my first ones and have been with me every second of the day for a year. Happen every second in all areaS at the same time ( hundreds all over every minute) effects do wear off after a few hours. I HSve been taking extra strength Advil but it doesn't seem to do the same thing. Tonight before bed I only put the cream on my feet ( both) left side of lower back and left side of neck. My entire left side of body is vibrating much less. Thus is odd bc both sides of my body do this equally. I don't know.. Anybody with more knowledge care to throw their two cents in?
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Old 05-14-2015, 05:36 AM #34
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I just wanted to ask how your symptoms compare to a month ago? Are you writing a journal? It can take a lot to distill what is useful over time. An example? Well, I have about three years (with a few "oh the humanity pauses involved) of journal. Pain scale just doesn't have the reverb I hoped and I stopped that after a few months. Yesterdays three feels like todays one in the mirror.

I usually note odd changes or that it id day so and so of this muscle in my calf soasming bad enough my leg is turning in. That sort of stuff.

I'm pulling for some relief for you.

Jon
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Old 05-14-2015, 06:06 AM #35
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Default I wouldn't think--

--that benign fasciculation syndrome and small fiber neuropathy are quite the same thing, as small-fiber neuropathy refers specifically to dysfunction of small, unmyelinated and thinly myelinated sensory nerves and fasciculation involves muscle, and even the smallest muscles are ennervated by more thickly myelinated nerve fibers.

There's nothing that says, though, that a similar originating process or etiology may be behind both in some cases. Moreover, it is common to have mixed types of neuropathy, in which both myelinated and unmyelinated fibers are involved. Often, a process that attacks the axon--the nerve fiber itself, instead of the myelin covering--will affect both small and larger fibers. (Small-fiber syndromes, by definition, are axonal; larger fiber syndromes can be axonal, myelin-based, or both.)

Last edited by glenntaj; 05-15-2015 at 06:00 AM.
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Old 05-14-2015, 07:50 AM #36
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Ragtop,

In all your reading about BFS, do you know if it's common/uncommon or unheard of to just have it in just one part of your body, like say your left leg?

Thanks.
Many of the BFS'ers talk about "hot spots" - an area that has the highest concentration of fasciculations. But, for many people the hot spots move around and I would say that very few had the symptoms limited to one specific area. Again, like SFN - the symptoms can wax and wane, change location, etc.
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Old 05-14-2015, 08:03 AM #37
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Is the BFS diagnosed by skin biopsy? It sounds pretty much like the same thing or maybe just one level below since it doesn't have the extreme shooting pain type of neuropathy.
It really sounds the same. Ive never heard of BFS.
This is interesting to me. I have always had hyperexitabliliy of my nervous system, but never this pain, spasms, twitching and autonomic dysfunction anything like this.
The term "benign" in BFS is much the same as the term "ideopathic" applied to neuropathy. So, BFS is a diagnosis of exclusion. As with neuropathy, you would typically see a neurologist and get MRI's NCV, EMG, blood tests, etc. - mostly the same tests you would get for neuropathy. If you are having ongoing muscle twitches without any evidence of a cause such as ALS, MS, etc. - they would diagnose you with BFS. They also have more severe cases that include muscle cramping (sometimes called "cramp fasciculation syndrome") and the most severe is neuromyotonia where your muscles essentially lock up because the motor neurons keep firing continuously. All of these fall under the umbrella of "peripheral nerve hyperexcitability syndrome". Kind of confusing since several different names are used.
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Old 05-14-2015, 08:17 AM #38
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Originally Posted by glenntaj View Post
--that benign fasciculation syndrome and small fiber neuropathy are quite the same thing, as small-fiber neuropathy refers specifically to dysfunction of small, unmyelinated and thinly myelinated sensory nerves and fasciculation involves muscle, and even the smallest muscles are ennervated by more thickly myelinated nerve fibers.

There's nothing that says, though, that a similar originating process or etiology may be behind both in some cases. Moreover, it is common to have mixed types of neuropathy, in which both myelinated and unmyelinated fibers are involved. Often, a process that attacks the axon--the nerve fiber itself, instead of the myelin covering--will affect both small and larger fibers. (Small-fiber syndromes, be definition, are axonal; larger fiber syndromes can be axonal, myelin-based, or both.)
I suppose you are right. BFS is by definition a benign condition which involves the motor neurons but does not include any damage to them. The neurons are firing but it is unclear why. Maybe it would be more appropriate to just say that BFS can be a symptom of SFN - rather than to say they are the same thing.
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Old 05-14-2015, 08:26 AM #39
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I just wanted to ask how your symptoms compare to a month ago? Are you writing a journal? It can take a lot to distill what is useful over time. An example? Well, I have about three years (with a few "oh the humanity pauses involved) of journal. Pain scale just doesn't have the reverb I hoped and I stopped that after a few months. Yesterdays three feels like todays one in the mirror.

I usually note odd changes or that it id day so and so of this muscle in my calf soasming bad enough my leg is turning in. That sort of stuff.

I'm pulling for some relief for you.

Jon

I have on and off but not right now. It makes me really depressed to write things out and sends me to a mental breakdown. Plus, none of my neuros care and don't let me tell them all my symptoms antway. They look annoyed when I pull it out and don't let me past the first few symptoms
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Old 05-14-2015, 10:29 AM #40
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Originally Posted by Ragtop262 View Post
Many of the BFS'ers talk about "hot spots" - an area that has the highest concentration of fasciculations. But, for many people the hot spots move around and I would say that very few had the symptoms limited to one specific area. Again, like SFN - the symptoms can wax and wane, change location, etc.
Ok, thanks. I ask because I've had neurological symptoms in my left leg since 1986. It consisted of paresthesia and twitching mostly, but was confined to my left leg for 27 years. Then on Nov. 10th, 2013, I woke up, and everything changed. I had classic SFN symptoms in both legs and other neuro sensations body-wide.

I'm so weird.
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