Peripheral Neuropathy and benign fasciculation syndrome.

Posted by sherryw @sherryw, Aug 5, 2019

My neurologist diagnosed me with small fiber peripheral neuropathy. He states i also have BFS (benign fasciculation syndrome.) My legs have weird sensations/zaps/pops, especially at night or when I am lying down. Do others have this problem?

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Can physical therapy help? I have small cell neuropathy. My have common symptoms . My left arm hangs and now my right arm is beginning to feeling funny. I do have an appt. in 2 months with another neurologist but I seem to be getting worse, My first neurologist said he can't figure out what is wrong. Can I do anything to help or go somewhere for help before the 2 months.

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I am 57 years old. I am truly frightened as I have muscle twitching almost constantly in calves and thighs. Less frequently in other regions. My fear is ALS I have visited my doctor. All labs are normal. My question is can someone my age be diagnosed with bfs? The Internet is truly scary

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@tromy

I am 57 years old. I am truly frightened as I have muscle twitching almost constantly in calves and thighs. Less frequently in other regions. My fear is ALS I have visited my doctor. All labs are normal. My question is can someone my age be diagnosed with bfs? The Internet is truly scary

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I was recently diagnosed with PN and experience twitching in calves, thighs, and arms (triceps primarily) as well and have similar anxiety. I did have an EMG and nerve conduction study and was told it was not ALS. PN can cause the symptoms we’re having but it is difficult not to worry about it. Have you had an EMG?

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I also had some twitching in calves…in the end it’s neuropathy. I had nerve conduction testing…first one came back normal…a year later PN showed. Everyone with twitching has the fear you have…doesn’t mean als….ironically the fear and stress aggravates the twitching.
BFS is certainly a possibility.
If you haven’t already, see a neurologist . In addition you could consider magnesium supplements ( I take magnesium citrate daily).
PS…I went through all the fear you are experiencing…I can empathize…Best wishes.

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@wyp4251987

I was recently diagnosed with PN and experience twitching in calves, thighs, and arms (triceps primarily) as well and have similar anxiety. I did have an EMG and nerve conduction study and was told it was not ALS. PN can cause the symptoms we’re having but it is difficult not to worry about it. Have you had an EMG?

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I can’t thank you both enough for responding. I have an appointment again with my GP tomorrow and getting a referral to a neurologist. The sad thing is I am an RN and can’t grab myself out of this hole. Thank you again for the encouragement

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It is a hard hole to crawl out of. The twitching can where you down for sure.
My EMG was abnormal with diagnosis of mild/moderate severity, axonal, length dependent. Peripheral Neuropathy. I also have issues with my L4 and S1 contributing to the problem. I am a 61 yr old male. Let me know how things go for you.

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@wyp4251987

It is a hard hole to crawl out of. The twitching can where you down for sure.
My EMG was abnormal with diagnosis of mild/moderate severity, axonal, length dependent. Peripheral Neuropathy. I also have issues with my L4 and S1 contributing to the problem. I am a 61 yr old male. Let me know how things go for you.

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Wear you down. Sorry about that.

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To
wyp4251987.
I’m so sorry. I too have these symptoms in a very severe form.
My diagnosis 23 yrs back was neuropathy. Directly after two seperate spine issues n two separate spine events causing exact same symptoms.
I’m so sorry because unless you can find th cause it will continue.
Even if th cause is found, usually stopping th hyperactive nerve impulses is only accomplished with IvIG therapy. Apparently it’s like finding gold. No one does it or will approve it. Mainstream medicine doesn’t even evaluate all the symptoms because they won’t accept nutrition based deficiencies as a symptom. Without recognizing the causes n symptoms one can’t hope to fix th problem. I’ve fought thru this 23 years.
I study neuropathy websites and what others have been successful with.
Severe intense burining, muscle cramping into th bottoms of feet, pain n numbness in toes, ( then arms, hands, head n face). Th head symptom s include severe tinnitus ( from th neuropathy), sounds like angry bees, and hot sharp, stabbing inside ears n muscles of head / face. Miserable. Daily migraines from th beginning of spine disease causing disintegration of th vertebrae/disks. Add bone spurs. Now it’s every joint too. In my head vertigo started in 2018. It’s constant but varies in severity. Sometimes food sensitivity plays a role in my vertigo and head pressure. Study food sensitivity too. Start with th normal high trigger foods.
It’s a terrible progression of an acidic body. It also involves bad food digesting n sometimes slow digestion. We added digestive enzymes every meal.
My tremors didn’t start until 2019. Almost 20 yrs after th start.
Do a lot of reading into anti inflammatory supplements/foods.
Switch to whole food vitamins because this usually follows chronic / autoimmune issues u may not have discovered. My thyroid n adrenals were failing from nutrient deficiency. I supplement magnesium ( blend not oxide), potassium, calcium, zinc to start. Take magnesium away from other stuff.
I follow thyroid specialists in Functional Medicine. It’s been my savior. Thyroid is finally working.
Salon Pas numbing roll on or patches helps really nasty spots.
Muscles r hard too. Anything that relaxes muscles n chaotic nerve signals is a friend.
Ginseng n kava help tremendously with pain n circulatory ( small capillaries). Neuropathy causes bad fine motor control and bad blood circulation. Follow holistic remedies particular to you. It all helps.
St John’s Wort -pain
Lemon Balm - pain
Baclofen, my fav muscle relaxer.
Organic whole food. Not frozen. Not processed. No fast food without clean ingredients.
Lots of vegetables, especially broccoli.
Anything that increases Glutathione. ( not glutathione directly, I use L-Glutamine).
I’m not diabetic but every diabetic I’ve spoken to or read about all started with thyroid issues. It gets shut down from toxins. Then th liver stops detoxing n hormones get out of balance. It’s all tied to th liver n thyroid. Stress does indeed kill. Lack of sleep and bad water all build up inside th body. I’m barely scratching th surface here.
Don’t drink tap water.
We had a huge issue n had to leave our home for repairs. Th 3 months we had no water filter all my joints developed bone spurs. Noticeable with th naked eye.
Plastic food / water containers are poison-period.
Look up clean food practices and organic produce. Try to remove every toxin in your life.
Personal use items.
Clothing
Air
Supplements even have rancid oils used in them.
Stay away from vegetable oils. Any kind.
Cook w/ coconut, organic butter n organic olive oil only or Ghee.
It’s taken us since 2019 to make all these changes. My Cancer survivor husband is th only person still alive from his Cancer group in 2015💕🙏🏻
I sincerely hope this gives you enough info to get going. Th cleaner you live n th faster you start, th more positive outcome you should have.
Use thyroid supplements like high gamma vit E, liquid vitamin B, D3/k2 and good quality supplements.
Get an entire thyroid assay-not TSH to see how things are fr yourself. Use bioidentical thyroid help. We all need progesterone because all this uses hormones rapidly but not without monitoring. Even mature men need sm amounts of Progesterone. Balancing hormones ease’s physical stress.
I use a hormone clinic.
I know all this DOES work, for every one. It’s a huge lifestyle change. Holistic remedies like arnica I use for pain.
Get an independent search engine so you can get ALL th info out there.
Everything I’ve mentioned is backed by documented studies. Most are outside th US.
I’ll pray fr you because this is a horrible, stressful, isolating group of pain n symptoms. Functional Medicine and a few good honest Drs have pulled me thru along with a great loving husband 💕🇺🇸

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@iceblue

Hi Sherry - Many of your symptoms sound VERY much like mine. My hands are not problematic during the day, but when I'm sleeping it's a whole other story as I wake frequently with pins/needles sensations (no burning). The neurologist said that is likely due to the position of my hands when I sleep. It's so irritating I've thought of sleeping with braces on my wrists to see if it makes a difference.

Thanks to Gabapentin, I no longer wake up with burning feet, and in fact, my foot pain (which was fairly constant) has been eliminated. The one thing I still experience is the popping in my calves. I describe the sensation as being like popping corn (pop, pop, pop); thankfully it is NOT painful, just irritating. Like you - if I move my legs, the sensation stops. I do experience other sensations like electrical zaps - but they are infrequent and don't fuss me at all.

I've had the symptoms for a long time, but was only diagnosed a couple of months ago. I am satisfied with the treatment plan thus far.

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Hello,

Would you mind to share what has been the diagnosis?

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I have had burning sensations under my both feet fore more than year. It started 2-3 weeks after the 3rd dose of my vaccine. As I was a distant runner, the specialists I visited last year were suspicious to an injury/tightness/nerve compression due to high volume of running.
Last may, for a month, I have episodes of electric shocks on both sides of my head and face. But it disappeared.
 Suddenly, my symptoms got worse 4 month ago. Since then, I have experiencing new symptoms in addition to burning, including tingling, fasciculation (constantly in my calf, and sometime on my face, chest, arm, and back), pain on and under my arms, twitching in my outer ear!, burning sensation in my tongue, abdominal pain, etc.
My EMG and central nerve MRIs have been normal.
It's been more than a month since I started taking gabapentin. It has not been very helpful

It seems to me SFN is the culprit, looking at this link

Please let me know if anyone has experienced these symptoms. Any diagnosis? Treatment?

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