Interesting Dr.'s Visit

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Interesting Dr.'s Visit

Postby physerv24 on November 10th, 2014, 8:27 pm

Today I went to see a neurosurgeon about possible treatment for the disc problems I have in my neck. After going over my complete medical history, he stated he had "never heard of BFS or CFS". He stated that there was no way the disc problems I have in my neck would cause muscle twitching, especially to the extent that I have. He observed my upper body twitching; arms, chest, shoulders, back,etc. Said he had never seen a patient like me in his 30 years of practice. He wanted to know if I would come in next week during one of his teaching sessions for new neurology residents so that they could observe my twitching. Can't say that I was too happy about that. I told him that if he could offer some type of treatment, I might consider being a "guinea pig" for a day. Of course, he had no recommendations as to what I could do. He did some strength tests (although I'm not sure why because he stated that he was not a neuro-muscular specialist but rather a neurosurgeon), which I passed without problem. He was fascinated with my twitching.

Anyway, he did not suggest surgery at this point as he stated that my neck condition is "degenerative" and will undoubtedly get worse as I age. He stated that as long as I was mobile he did not want to do any surgery. Said I should put it off as long as possible.

By the way, after my two trips to Cleveland Clinic, they never would give me a diagnosis. Just said no MND.

Best wishes to all,

Vince
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Re: Interesting Dr.'s Visit

Postby LKP1231 on November 10th, 2014, 9:13 pm

That was a strange reaction. I find it hard to believe he's never seen all over twitching before.
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Re: Interesting Dr.'s Visit

Postby TwitchyDoc on November 11th, 2014, 1:56 pm

BFS is quite a rare disorder, I am not surprised by his reaction. Whoever says "BFS is common" confuses occassional twitches for frequent and widespread fasciculations, which is something entirely different and considered rare. I got a similar response from a neuromuscular specialist leading a clinic for muscle and nerve diseases - he said he had seen 2 patiens like me in 35 years.
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Re: Interesting Dr.'s Visit

Postby mwagner on November 11th, 2014, 2:11 pm

Just to balance this out: my neurologist said he sees one person a month complaining to have what I had (constant fasciculations). That's 12 people a year, for one neurologist, in one city.
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Re: Interesting Dr.'s Visit

Postby nickston on November 11th, 2014, 2:48 pm

There's a selection bias you guys are not accounting for. Perhaps BFS is very common, but the people who actually post on this site or bother to visit neuromuscular specialists are only those people who have both BFS and enough anxiety to cause them to post/visit a specialist. BFSers without the anxiety--i.e., non-hypochondriacs--will not care to Google it or visit numerous docs or get EMGs; they will just shrug it off as no big deal and move on. You cannot use anecdotal support in this way to draw any kind of conclusions about the incidence of BFS. The only kind of conclusions you can draw is the number of people with BFS and anxiety, and even then it's not really valid.
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Re: Interesting Dr.'s Visit

Postby elliottok on November 11th, 2014, 3:58 pm

My neuro says he sees around 4 cases a month of BFS.
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Re: Interesting Dr.'s Visit

Postby TwitchyDoc on November 11th, 2014, 4:48 pm

I think those neurologists claiming to see BFS 4 times a month are simply counting people with eyelid twitches or those with calf twitching only. I too met at least 3-4 who said they see it often. When I wanted them to elaborate, they admit what I suspected - they consider people coming for annoying eyelid twitches or similar issues. Benign fasciculations does not mean implicitly widespread and frequent fasciculations.
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Re: Interesting Dr.'s Visit

Postby physerv24 on November 11th, 2014, 10:19 pm

Pretty much spot on Twitchydoc. What surprised him was the widespread nature of my twitching and frequency. He even commented that "everybody twitches", however not to this extent. I'm in no way trying to lessen the severity of the suffering by those who post on this board, but there is a big difference between an occasional twitch here and there, as experienced by the general population, and months or even years of constant twitching without respite.
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Re: Interesting Dr.'s Visit

Postby RobJ on November 25th, 2014, 8:28 am

I'm going to take a ripping for this.

The neurologists that are saying they've seen X no. per month are exaggerating or they are seeing the normal twitching that is seen. My son twitches, my niece twitches, my sister twitches, and my mother twitches much more than my wife, my daughter, and my father and they have all informed their doctor and their doctor says "everyone twitches." The difference is that I can show you twitches at almost any point in the day. I can elicit twitches.

It's very rare to be able to see the twitches on call, I don't have the proof, but based on posts in "other" forums, I believe it's rarer than some MND's.

I've seen experienced and inexperienced neurologists (it will be 21 years in Februrary of 2015). The experienced one's could care less. The inexperienced one's stare and then pause, then lose their train of thought. They remember the MND days in med school.

I think there are different levels that are diagnosable. I for one have had an elevated CPK for 21 years with no weakness but I twitch, I jerk, I buzz, I tingle, I cramp boy lately do I cramp! I have good days and bad days, but I can show every doctor my twitching at any time.
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Re: Interesting Dr.'s Visit

Postby physerv24 on November 25th, 2014, 9:07 am

RobJ,

Wow. 21 years of twitching. I can't even comprehend that. But I appreciate your post. I too, at every single doctor visit whether it be a neuro or primary care doc, can show them my body-wide twitching. And at every single visit, they all act perplexed. The neuros at Cleveland Clinic weren't as stunned as others, but even they brought in a couple of other neuros during my exam so that they could see the twitching.

My hat's off to you though. 21 years and you still have your sanity. Incidentally, every time I sneeze I get cramps in my abdomen.
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Re: Interesting Dr.'s Visit

Postby RobJ on November 26th, 2014, 8:04 am

Physerv24, (what does this mean?)

It doesn't matter where you cramp or where you twitch or how often you twitch or how often you cramp. The studies that have been done don't have enough of a population to be statistically accurate. I've read if you cramp in your abdomen that's an omen. I cramp severely in my abdomen at times when I'm working and bending over, hate the stretches in the morning, not sure where I'm going to cramp. I cramp in my throat, fingers, toes, arches, calves, thigh, back, just about everywhere. I'm going through a bad time right now with cramping in my toes and arches of feet. I'll get over it, always do.

You need one thing for it to be bad, WEAKNESS. Everything else is irrelevant
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Re: Interesting Dr.'s Visit

Postby Yuliasir on November 26th, 2014, 8:48 am

I have abdominal cramps too :) for many years
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Re: Interesting Dr.'s Visit

Postby physerv24 on November 26th, 2014, 9:05 am

Regarding physerv24; I spent 12 years with a physician owned preferred provider organization named "Physician Services, LC". That's where it comes from. With regard to the cramping, I can totally relate to the morning stretches. I'll get them in my calves when I stand and get a good stretch by standing on my tip toes and reaching for the sky with my arms. They don't last long, but happens just about every morning. Also, I get cramps in the front of my neck when I yawn. Again, they don't last long but happens quite frequently. With me it doesn't seem to be so much a "cramp" as it does that the muscle is slow to relax after being stretched. Takes a few seconds for it to go back to it's resting position. Not like a painful charlie horse cramp. It's all very odd to me. Happens with my hands sometimes. If I clinch my fist very tight, sometimes when I try to open it back up, one or more fingers will "lock" at a 90 degree angle. If I bend my wrist forward, sometimes it will be difficult to straighten it back up and I will feel an extreme tightening all along the underside of my forearm from the wrist all the way to the elbow. It's like my tendons are not moving freely through the sheath that encases them.

Regards,

Vince
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Re: Interesting Dr.'s Visit

Postby RobJ on November 26th, 2014, 1:29 pm

delayed relaxation I don't have. I think this symptom leans you more towards Isaac's....but it's just a name. I think it's all the same but at different levels. My grandfather had Parkinson's for 30 years, just the shakes and shuffling, died at 97, My mother in law had Parkinson's and went quick, dementia and all that crap that goes with it.\
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Re: Interesting Dr.'s Visit

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