BFS vs. Peripheral Neuropathy...

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BFS vs. Peripheral Neuropathy...

Postby UFGatorGuy20 on February 28th, 2014, 11:36 am

I'm trying to find folks that feel their symptoms are more "neuropathy" type issues as opposed to just muscle fasciculations everywhere. My symptoms started as bilateral ulnar and median nerve issues (numbness first, followed by aching and numbness in fingers and elbows over a few months, then some twitching in my fingers and elbows... then it cleared up 90-95%). Then my calves started twitching (went bodywide after a few weeks... zero muscle exceptions). I'm cleared of MS and &LS. Had a clean brain MRI and just had my nerve conduction and EMG yesterday. Nerve conduction found minimal carpal tunnel in my right hand and minimal ulnar / cubital tunnel problems in my left hand. All other upper extremity nerve readings looked good. No damage or entrapment. EMG showed all the correct neuron amplitudes and activity. YET, my fingers ache... my elbows are sore... my arms and upper back always seem to ache. My feet sometimes throb on me or my knees will ache. I still have the fasciculations everywhere, but reduced from what they were a few months back. I've managed to reduce my anxiety and get over the &LS scare. The aching is pretty persistent though. I find myself taking sea salt baths 4-5 times a week. I don't have any burning, hot / cold intolerances, or sensitive skin areas. No weakness. Even the numbness I get is very light and transient. Not enough to lose complete feeling or touch. So I use the term "neuropathy" very loosely. My neurologist said I have minimal neuropathy signs and mainly in my left elbow... where I don't even have pain! haha...

Bottom line.. I'm hoping to find folks that started off similar to me... and I know they have (bilateral ulnar issues first)... but how they've done long term. Did they explode into some wicked PN that needs to be managed similar to MS? I know we ALL have varying symptoms so I won't find anyone just like me. But, I'm curious if all the sensory issues are part of the BFS ball of wax (minimal nerve issues were found on my nerve conduction test... so I'm hoping it's just overexcited nerves sending me mixed signals) or if there is really a link to PN. I've seen people say there is on youtube, webmd, etc... how fasciculations are followed by neuropathy. Not trying to get people worked up. I believe PN can be managed successfully.

My PN related searching here gave me minimal results. I came across "StevePaul" who apparently knows a lot about PN, but hasn't been around here since 2009 and looks like he may have started his own PNH site (different from PN). So, my apologies if this has been discussed before. If someone has a good thread to share, just copy and paste and I'll go along doing my own reading. I don't want to be the guy that gets "new thread trigger happy."

Peace out guys and gals. 8)
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Re: BFS vs. Peripheral Neuropathy...

Postby UFGatorGuy20 on March 4th, 2014, 9:45 am

Beuller?
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Re: BFS vs. Peripheral Neuropathy...

Postby Scaredlin on March 4th, 2014, 2:03 pm

Dont know how much I can really add to this since I am still really in the diagnostic stage, but yes, I have symptoms similar to PN. I posted yesterday on the Support page you can check it out there. My upper back, traps and neck are in constant pain and unlike you I burn from my neck to my fingertips at night with my forearm muscles almost twisting. Some tingles but mainly burning. I have also begun getting stabbing pains at the tips of my toes and cramps in them, ankles, etc.

I still have some outstanding bloodwork from endocrinologists and autoimmune drs so thats why Im not 100% Im a BFSer yet. If they come back clear, I guess I am. So I just had an EMG 3 weeks ago I can't imagine how I could have developed a PN in the interim OR that it didn't pick up something small. Mine was completely clean. So I guess maybe BFS can mimic PN!!! THe other alternative is small fiber neuropathy which is not picked up by an EMG and which needs some special test and a muscle biopsy.

Remember if you truly have a PN, some are from systemic illnesses which is why you need to find the cause. Some are idiopathic, meaning no one knows why/how they develop. Im with you- I just want know one way or another what it is! I guess since we are fairly junior, its a waiting game which I HATE!
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Re: BFS vs. Peripheral Neuropathy...

Postby ShawnW on March 4th, 2014, 4:16 pm

I have the aching of hands and feet something terrible. It's worse when Im stressed. It comes and goes. I'm not exactly sure what it is...but I suspect it's in the family of fibromyalgia. With that said, if you have joint swelling and pain wouldn't hurt to allow a rheumatologist to take a look at you. But, I suspect the work up with come back negative.
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Re: BFS vs. Peripheral Neuropathy...

Postby UFGatorGuy20 on March 4th, 2014, 6:41 pm

Thanks for the input ScaredLin and ShawnW.

I really just feel this is all a wait and see game. I'm hoping this thread will attract a veteran out there. But, I think there are so many nerve conditions that mimic one another it may be difficult. Even the same conditions have varying symptoms of their own. Not a one of us "BFSers" are exactly alike. Even though the word BENIGN is a part of what we think we have, it sure doesn't feel like it sometimes. No, it's not life threatening or disabling. But, pain is pain!

A lot of what I've had lately now that the twitches have died down seems more fibro related. Just achiness in my fingers, hands, forearms, elbows. Not 24/7. No burning. No joint swelling or joint pain. Feels more like it's in the muscles. I already had an ANA test for rheumetoid arthritis. Came back negative.

Regardless, I'm trying to do my best to improve things within my control... regardless of whatever nerve issue I have or don't have. I've come across many common protocols that people follow... whether BFS, PN, MS, etc:

- Reduce inflammation through diet (no gluten, no wheat, no dairy, reduce sugars, no alcohol, no grains)
- Reduce stress in whatever way possible (meditation, light exercise, massage therapy... whatever!)
- Avoid toxins that would irritate you (tap water, chemicals, etc)
- Supplements are TBD. I think I overdid it when this all set in. I was taking D3, Omega-3, B12, Magnesium, and Dandelion. I cut it all off for one more round of clean blood work at my neurologists request. After that I'm going to start focusing on nerves (B12, Alpha-Lipoic-Acid, Folate, CoQ10, etc.).
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Re: BFS vs. Peripheral Neuropathy...

Postby Fallen on March 4th, 2014, 7:50 pm

I'm not sure if the dietary protocols you listed neccessarily help with inflammation, and at the very least, help with systemic, autoimmune disorders.

I think a large reason for why they are advertised as a remedy for PN is because PN is one of the symptoms of Celiacs that is very rarely mentioned. I read recently that a statistically significant number of people with Celiacs have PN. Since diagnosis of Celiacs is often difficult because physicians don't notice the symptoms (largely because the symptoms vary by a large degree), a lot of people who notice the various health improvements related to going gluten free notice it because they do have Celiacs (or even non-celiacs, gluten sensitivity).

I have some of the symptoms you've mentioned in your post. My symptoms are considerably more tame. My GP is putting it down to stress.
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Re: BFS vs. Peripheral Neuropathy...

Postby Watereddown on March 7th, 2014, 6:49 am

Alright I'll give this a go, mainly since I'm doing my best to procrastinate studying for my test in 6 hours:

I've noticed in your post UFGator that we seem to borderline very similar in terms of symptoms. My initial symptoms were different than yours though. The way mine sort of unraveled was i woke up one day after 2 months of heavy HEAVY stress and anxiety to tingling in my left hand and left foot. Now before I go further, I would like to add that proceeding this, I was in and out of the hospital because I just wasn't feeling right--losing weight, canker sores, swollen lymph node...the such. After numerous visits to the hospital, and after all blood tests came back normal, I finally convinced myself i was ok. That's when the tingling happened and all hell broke loose. A week prior to the tingling, I went to an amusement park in which i rode roller coasters all day. Probably a bad idea since i have l4/l5/s1 disc herniations with sciatica down the left leg. I don't know if this is what triggered the tingling, but the neurologists think so. My hand was sort of in a weird position when i woke up and thats why it was tingling, as the tingling went away after a little time past, however my foot tingled for about a week. This is a day that I attribute to in which my nerves officially became sensitive. Anyways, about a couple weeks after the tingling, I began to notice the muscle twitches. I don't know if I was just hyperaware at this point, or just didn't notice them before, but they were there, and they were scary as i thought they were a sure link to MS (i had no idea of ALS at the time). About a month after tingling, I began waking up almost every day with numbness in my pinky and ring finger in both hands. I had no idea why this was happening. Did a quick google search (at this point ive seen 2 neuro's who have cleared me of anything sinister) and see the word MS brought up every time. It drove me crazy. Of course bring it up to the neuro at the next appointment and he looks at me like im crazy to think something that goes away once i start to move the arm around is anything serious.

So to give a timeline
july-tingling
august-twitching
september-numbness in fingers

This is the part where I really am kinda stumped. During august and september, I had almost every symptom a BFS person can have. brain fog, to the almost cramps, the muscle stiffness, the weird vibration, and the sorts. I finally convinced my neuro to order me an MRI, and when I got the news that it came back clean, I was just so in shock. I thought for sure I would hear horrible news. About a couple days after I heard the news about my clean MRI, I did not notice one symptom. NOT ONE. My leg wasnt stiff anymore, I wasn't waking up to numb fingers, there was no more tingling, no more muscle pains, no more finger aches, no more elbow aches. ALL GONE. It was literally a miracle, and was so happy and relieved. I thought to myself, "What do you know, the three neurologists were right."

As soon as i overcame that fear, I was able to start thinking rationally...

Then school started...and here comes the stress. At my school were on a quarter system, so we tend to be pretty fast paced. Fall quarter had started towards end of September ( a week after my MRI) and my nightmarish summer was behind me. MIdterm week came around, and a couple days before my first midterm, I woke up to my left arm COMPLETLY dead and numb. It was as if I had slept on it, but i wasn't. This scared the living $^&* out of me. It took me about 5 minutes just to regain full strength of my arm back, but the weird "after-taste" sensation sort of lingered throughout the rest of the day. The more I sit and analyze my story, the more I notice stress playing a big roll. Since that happened, ALL of my symptoms came back, and to this day, they still haven't left( well not until recently...hope it stays that way). I constantly have some sort of parasthesia going on. Around that same time period, however, my limbs fell asleep very easily, as one arm would fall asleep almost every night and just feel heavy until i moved it around.

When someone complains about parasthesia on this forum, I've felt just about every one.

But, there has to be an ending to every story right? Or at least a good story. So I was referred to a doctor here in LA who practices Visceral Manipulation, Neural Manipulation, and CranioSacral Therapy. She is basically a human cat scan. She touches the affected parts of your body, and knows exactly what is wrong. Trust i'm a HUGE skeptic of these kind of things, but decided to give her a shot after hearing rave reviews from close family and friends. After I had my initial appointment with her, where she felt my nerves and muscles surrounding them, she told me she had a strong suspicion that i had a food allergy. She said by feeling my muscles, she gets the feeling that Im allergic to eggs and dairy, and my body is producing antibodies that are affecting my tissues every time I eat them. So she ordered a food allergy test to test for this, and low and behold I tested positive for egg allergy. Now as I thought about it, I literally eat eggs every day. I'm a gym freak, and we all love our protein. I couldn't believe it. Ever since I cut them out of my diet, I've been feeling GREAT! I havent felt like this in a while, and i honesly hope Im not jinxing myself (*knock on wood). This lady is amazing, and if anyone is in the SoCal area, i definitely recommend seeing her (pm me). Of course I told her my fears of MS, and she said MS has a very distinct feeling when she is getting feedback from the nerves (She runs her fingers down the main nerves of your body and communicates with them). She told me she had a guy come in once who just wasn't feeling normal, and after she did her checkup and found it hard to communicate with the guys nerves, that she had a eery suspicion of MS. She told me about 6 months later the guy was diagnosed with MS. She said in my case (and probably a lot of people on this board) my nerves are "unhappy". At least thats what the feedback that she gets is. Like I said before, I was a skeptic, but when she was able to pinpoint a spot on my spine that has given me trouble in terms of pain for the last year without me telling her a word about it, she quickly won me over. So I"ve been going to her for the past month or so, where she literally massages the nerves (it feels as if she is just placing her fingers on them really) and I have noticed a huge improvement. Don't know if its a placebo, or if it's really working, but Im going to keep doing it.

Anyways, thats my story, and that is where I am after 8 months. Sorry for the huge rant, but i really dont feel like studying for this test.
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Re: BFS vs. Peripheral Neuropathy...

Postby udflfbajb on March 9th, 2014, 12:02 pm

My presenting symptoms were somewhat similar to yours. I came down with sudden parasthesia in my left thumb, which after a week or so rapidly spread to other fingers on both hands, especially at night. At this point I suspected carpal tunnel syndrome. In a day or two, some mild parasthesia appeared in my feet, followed by itching and pins and needles all over my body. Muscle aches and a rapidly spreading "buzzing" feeling in my muscles throughout my body followed. I realized something neurological was going on, and I had to be checked (and cleared) for MS and Guillain–Barré. The latter was a possible scenario because all this happened in the recovery phase of a mononucleosis infection.

Only then (I guess we are about 2 weeks into this stage now) did I notice the fasciculations in my calves. I had already had the familiar "crawling worms"-like feeling in my calves for a few days, but it didn't occur to me to look at my calves - I had no idea this feeling was caused by fasciculations.

Fasciculations have been the main symptom since. They're most frequent in my feet, calves, and tongue, but appear everywhere. Other symptoms include myokymia, myalgia (mild), myoclonus (which I have never had before, not even hypnic jerks), leg cramps, ratcheting (this symptom appeared very early, even before fasciculations), and sporadic essential tremor in my fingers.

I believe I have neuromyotonia triggered by an autoimmune reaction to my mononucleosis infection. Hopefully I can get my VGKC-antibodies tested one day. I've had this for about 16 months now. I don't have ALS and don't expect to develop it. It didn't even occur to me until I noticed my neurologists were looking for symptoms of it (in order to rule it out). Once I came to terms with the fact that I am not going to develop ALS, I haven't been bothered very much by my symptoms, even though they haven't changed :)
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Re: BFS vs. Peripheral Neuropathy...

Postby UFGatorGuy20 on March 10th, 2014, 9:29 am

Watereddown wrote:Alright I'll give this a go, mainly since I'm doing my best to procrastinate studying for my test in 6 hours:

I've noticed in your post UFGator that we seem to borderline very similar in terms of symptoms. My initial symptoms were different than yours though. The way mine sort of unraveled was i woke up one day after 2 months of heavy HEAVY stress and anxiety to tingling in my left hand and left foot. Now before I go further, I would like to add that proceeding this, I was in and out of the hospital because I just wasn't feeling right--losing weight, canker sores, swollen lymph node...the such. After numerous visits to the hospital, and after all blood tests came back normal, I finally convinced myself i was ok. That's when the tingling happened and all hell broke loose. A week prior to the tingling, I went to an amusement park in which i rode roller coasters all day. Probably a bad idea since i have l4/l5/s1 disc herniations with sciatica down the left leg. I don't know if this is what triggered the tingling, but the neurologists think so. My hand was sort of in a weird position when i woke up and thats why it was tingling, as the tingling went away after a little time past, however my foot tingled for about a week. This is a day that I attribute to in which my nerves officially became sensitive. Anyways, about a couple weeks after the tingling, I began to notice the muscle twitches. I don't know if I was just hyperaware at this point, or just didn't notice them before, but they were there, and they were scary as i thought they were a sure link to MS (i had no idea of ALS at the time). About a month after tingling, I began waking up almost every day with numbness in my pinky and ring finger in both hands. I had no idea why this was happening. Did a quick google search (at this point ive seen 2 neuro's who have cleared me of anything sinister) and see the word MS brought up every time. It drove me crazy. Of course bring it up to the neuro at the next appointment and he looks at me like im crazy to think something that goes away once i start to move the arm around is anything serious.

So to give a timeline
july-tingling
august-twitching
september-numbness in fingers

This is the part where I really am kinda stumped. During august and september, I had almost every symptom a BFS person can have. brain fog, to the almost cramps, the muscle stiffness, the weird vibration, and the sorts. I finally convinced my neuro to order me an MRI, and when I got the news that it came back clean, I was just so in shock. I thought for sure I would hear horrible news. About a couple days after I heard the news about my clean MRI, I did not notice one symptom. NOT ONE. My leg wasnt stiff anymore, I wasn't waking up to numb fingers, there was no more tingling, no more muscle pains, no more finger aches, no more elbow aches. ALL GONE. It was literally a miracle, and was so happy and relieved. I thought to myself, "What do you know, the three neurologists were right."

As soon as i overcame that fear, I was able to start thinking rationally...

Then school started...and here comes the stress. At my school were on a quarter system, so we tend to be pretty fast paced. Fall quarter had started towards end of September ( a week after my MRI) and my nightmarish summer was behind me. MIdterm week came around, and a couple days before my first midterm, I woke up to my left arm COMPLETLY dead and numb. It was as if I had slept on it, but i wasn't. This scared the living $^&* out of me. It took me about 5 minutes just to regain full strength of my arm back, but the weird "after-taste" sensation sort of lingered throughout the rest of the day. The more I sit and analyze my story, the more I notice stress playing a big roll. Since that happened, ALL of my symptoms came back, and to this day, they still haven't left( well not until recently...hope it stays that way). I constantly have some sort of parasthesia going on. Around that same time period, however, my limbs fell asleep very easily, as one arm would fall asleep almost every night and just feel heavy until i moved it around.

When someone complains about parasthesia on this forum, I've felt just about every one.

But, there has to be an ending to every story right? Or at least a good story. So I was referred to a doctor here in LA who practices Visceral Manipulation, Neural Manipulation, and CranioSacral Therapy. She is basically a human cat scan. She touches the affected parts of your body, and knows exactly what is wrong. Trust i'm a HUGE skeptic of these kind of things, but decided to give her a shot after hearing rave reviews from close family and friends. After I had my initial appointment with her, where she felt my nerves and muscles surrounding them, she told me she had a strong suspicion that i had a food allergy. She said by feeling my muscles, she gets the feeling that Im allergic to eggs and dairy, and my body is producing antibodies that are affecting my tissues every time I eat them. So she ordered a food allergy test to test for this, and low and behold I tested positive for egg allergy. Now as I thought about it, I literally eat eggs every day. I'm a gym freak, and we all love our protein. I couldn't believe it. Ever since I cut them out of my diet, I've been feeling GREAT! I havent felt like this in a while, and i honesly hope Im not jinxing myself (*knock on wood). This lady is amazing, and if anyone is in the SoCal area, i definitely recommend seeing her (pm me). Of course I told her my fears of MS, and she said MS has a very distinct feeling when she is getting feedback from the nerves (She runs her fingers down the main nerves of your body and communicates with them). She told me she had a guy come in once who just wasn't feeling normal, and after she did her checkup and found it hard to communicate with the guys nerves, that she had a eery suspicion of MS. She told me about 6 months later the guy was diagnosed with MS. She said in my case (and probably a lot of people on this board) my nerves are "unhappy". At least thats what the feedback that she gets is. Like I said before, I was a skeptic, but when she was able to pinpoint a spot on my spine that has given me trouble in terms of pain for the last year without me telling her a word about it, she quickly won me over. So I"ve been going to her for the past month or so, where she literally massages the nerves (it feels as if she is just placing her fingers on them really) and I have noticed a huge improvement. Don't know if its a placebo, or if it's really working, but Im going to keep doing it.

Anyways, thats my story, and that is where I am after 8 months. Sorry for the huge rant, but i really dont feel like studying for this test.




Thanks for the feedback waterddown! Like you, I've noticed a direct correlation between my symptoms and stress. It's strange how thigns have progressed for me. It started with the numbness and achiness in my hands / elbows. Then the twitching started, went bodywide, but now has reduced. My most noticeabe symptoms are just aches / pains just about everywhere, jello legs, my right arm will go jello like on me for about 15-20 minutes. A lot of consistency with fibromyalgia now. I think there is some overlap between BFS / nerve hyperexcitability / fibro. Seems I'm getting it all lately. But, back to the stress link... it seems with each new test the doctor orders I'm expecting some terrible news. First the MRI - nope... clean. Then the EMG and nerve conduction - nope overall very good. I just gave my 6th round of bloodwork and now they are looking at hepititus, HIV, heavy metal toxicity. I have NO REASOn to worry about an acquired virus... yet it crawls into my mind and my stress blows up and bam... I'm fatigued.

I do believe in links to food allergies too. I've done my best to eliminate the primary culprits. But, I've cheated a lot recently and have noticed my fatigue is worse...
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Re: BFS vs. Peripheral Neuropathy...

Postby jerseygirl on March 12th, 2014, 6:51 pm

I did an MS scare search, and your posts came up. Kind of gave me relief since I am having an MS scare right now. I am two years into the whole twitching thing but for me, it all started with waking up to what seemed like the bed was vibrating but it was my arm and leg with internal tremoring. Then came the muscle twitches. 2 years ago, I had a clean mri and have been on the slow road of acceptance that I don't have ALS, Parkinsons and was sure no MS because of the clean mri, however, two days ago, I got a new subtle facial twitch between my lower lip and chin, went to see the neuro, showed him a video and while he said the chances were slim, he said if it continues for a couple weeks, we better get another MRI to rule out MS again. I am so anxious right now and really would love some input from all of you that clearly have knowledge and reassurance from your dr.'s? Also, I am trying to tell myself that if it is MS, with the new meds, prognosis is more positive than negative? I am a 53 year old woman with three kids and the thought of them having to deal with their mom having a disease makes me so sad. Please, if you are able, I would welcome any information or advice. Thank you
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Re: BFS vs. Peripheral Neuropathy...

Postby Tiber2011 on March 14th, 2014, 8:53 am

UF Gatorguy, when I was in a daze of seeing doctors last year, I was referred to a 3rd neuro that specializes in neuropathy.

Smart guy; he looked at my MRIs, EMG, and we did autonomic testing. He said I most likely had "Small Fiber Neuropathy."

Neuro number 4 put me on Lyrica and told me that neuro was wrong....I knew he couldn't be right, because SFN is usually caused by diabetes. Anyway, Lyrica made most of my pain go away like it never happened. I'm a young guy like you. Usually diabetes, cancer and chemo cause neuropathies.

Not to advertise Lyrica, but it helped me a great bit, esp. with a neuro who knows about BFS (she even said "BFS," as if she's been on this site before....)
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