Frustration Over 2nd Opinion

aaaaaargh i am very frustrated. just got back from my 2nd opinion. basically this guys says there is no such thing as bfs, no viral connection, and that this is all stemming from anxiety!!!!

he did a very thorough clinical visit, actually more so than my first neuro guy (whom i have loved!), and then brushed everything off, saying this he can "100% guarantee that it is anxiety". said i have been over tested and over worked up. i was quick to point out that my gp and other neuro were mainly doing these tests for MY peace of mind (which is a GOOD thing!), not because they felt there is anything seriously wrong. so new guy was right there whipping out his packet of ssri's, and i'm still trying to ask him questions, and he's like "you know what, i can tell you aren't buying this, so let's refer you for a second (really 3rd - me not him saying this) opinion. lets send you to emory. so and so is a neuromuscular specialist and you can ask him all your questions." like he was annoyed that i was questioning him or something, such an ass

so i am looking at the positive aspects of this. if he is saying it is 100% stress/anxiety, then he obviously thinks it is 100% not something dreadful, **s, *s, etc... i am also getting a referral to an emory neuromuscular specialist out of this (emory is, like, the BEST here in atlanta), and only having to wait one week for the appointment. plus he now makes, dr #4 (2 neuros, 1 gp, 1 homeopath), plus all the tests saying nothing serious is going on. #2 said today the only thing that can cause these widesperead fascics is **s, and you don't have the symptoms of that. i find this reassuring and disturbing at the same time, know what i mean!?

i am very thankful that he is my 2nd opinion, not my first!!! if i had him initially with all this, i would have left feeling completely helpless, frustrated, and unsatisfied. as it is, i have had all the great reassurances/bedside manner/tests from neuro #1, and now #2, although completely annoying and egotistical, also agrees that nothing serious is wrong, even though he says it its all anxiety. he is right, i don't buy it. not that i think it is neccesarily something dreadful. all these drs can't be wrong about that, and i am coming to have more acceptance to that fact. BUT, no WAY is this all stress!!!!!! something has caused it!

has anyone else had this experience with a neuro? i am finding it very aggrivating

mel

Back in September when I had my last neuro visit, my doctor talked to me about BFS and how it is presenting itself these days. Her practice is seeing 1-2 cases each month. She said she had went to a national neurological conference and there was a roundtable discussion on BFS (the first time ever). If it doesn't exist, why the roundtable discussion.....hmmmm. Your 2nd neuro sounds like a bit of a quack to me. Not that he couldn't tell you were clinically fine with all the in-office testing, but to come out and say it doesn't exist, I can't agree with that.

You are going to find people (and doctors) like that, who just want to believe what they want to believe, just like there are doctors out there that only believe in natural remedies, and other's that only believe in science. Some natural remedies do work, and other's don't.

Obviously waving a wand made out of dusty chicken feathers and chanting to the sun gods to rid this person of their bad spirits isn't going to cure someone with a real disease. Nor is seeing a doctor that does trickery, which is what killed the famous actor, Peter Seller's when he believed the quack doctors were actually performing surgery on him with their bare hands, right through his skin, when in fact, all it was, was "palming" some cat guts, to make it look like they were removing tumors, and the cancer he had killed him.

There are LOTS of whack-o doctors out there, I have met plenty of them (and played golf with a few too) , this is why the medical community is common for having "second opinions" and why they call it "practicing".

On the flip side, you have to consider that a lot of "scientific" things come from natural beginnings, like aspirin coming from Willow Tree bark, or valium coming from Valerian Root, and so on. It's all relative.

Just know that you don't have ALS and that not everyone knows about BFS yet, (including some closed minded doctors out there), so they blow-it off as "it doesn't exist". Well, they said that about many things in the scientific community in the past that have proven wrong many times over.

The masses tell the story here. There is LOTS of hard core, accurate information on this site about BFS, how it works, what it does, what to expect from it, and so on. Just take what you have learned as collective information and make your own assumptions from there.

Deja Vu
My GP is great but he didn't have word bfS in his dictionary. He referred to it as benign fasciculations and in view of my age (43)and general health thought that testing for anything was pointless.I'm english so he's not afraid NOT to test.
'You're under stress and anxiety, you've probably had a viral infection in the recent past . This is why it has occured- you don't have anything dangerous serious or life threatening -I can imagine it's irritating and worrying but with no muscle power loss you're not in the neuromuscular disease category.If we test it will be -ve I assure you . I've seen patients with serious NM diseases and they don't walk in with fasciculations. One had to be carried in- stop worrying and treat it like errrr dandruff -(yes really ! - irritating but nothing to lose sleep over.'
The irony that i've been sleeping 10 +hours a day for several weeks was not lost on me !

Just remember, some people with BFS report having a viral infection before their symptoms appeared and just as many others say they haven't been sick in years.

Many people commonly get sick. We sell meds in this country more than we do candy, and most people do get some sort of bacterial or viral thing going-on every so often. It's normal. Some people say the infection they had occured weeks before their BFS symptoms appeared, and other's say it was months before. Other's have said they hadn't been sick in years. It's hard to say if it's a viral thing when so many people commonly get sick anyway. If you get sick say every 3 months, (4 times a year), then no matter what you get, you can associate it to being within a couple of months of having some sort of viral thing going-on.

There was even speculation a few years ago that BFS was caused by some sort of herpes virus, and many people came forward and said they had HSV1 or HSV 2. If you've ever had a cold sore or the chicken pox... then you have herpes. So many people have it (almost half the population. They say 33% but that's only peopel that come in for it. Do YOU go to the doctor when you have a cold sore?), it was like saying everyone with BFS has hair on top of their heads. Well, most of us do, so it must be caused by having hair on your head. The fact of the matter is, hair is just a common thing that a lot of people have, but it isn't related to the cause of BFS. Not that we can show anyway, but if we want to include it as a cause, I am sure there are people on here that will join-in on the fun.

Trust me, if there was a one sidedness to this stuff, we would be working in that direction to find a common ground insdtead of running around in circles. What you guys and your doctors talked about (a viral cause) is what many of us have talked about many years ago, and we still have no common ground or connections between viral infections and BFS, nor are we any closer to the cause, treatment or cure of this stuff, other than coming to terms with you not having anything sinister and being able to "let it go" and move-on with life. The chemicals released in your system over the anxiety and fear of this stuff feeds BFS like dry weeds in a hot summer wild fire. Get rid of the fuel, and the fire will go out

i realize that there is no definative cause for bfs. i just thought it quite a coincedence that mine started the EXACT DAY i came down with the worst bug i have had in years. noone can truly say what causes it, but i personally feel like this caused something to occure in my body. perhaps lowered my immunity to whatever does cause this, or simply allowed what has always been very mild twitching, every now and then, to just EXPLODE in my body. i will always feel that there is some kind of connection for me here, and for my dr to just dismiss it immediately, when there has in the past been at least some research to indicate a possible connection was aggrivating to me personally. perhaps there are different triggers for different people. after all, why can some people smoke for decades and live to be 101, and others never smoke and die of lung cancer. our bodies are different, and are going to respond differently to external and internal stimuli.

mel

Look on the bright side, WE all believe in BFS, so do my friends and family and my Doc. That's good enough for me

Mel,

The Principles of Neurology Textbook 2005 Edition (which every neuro has in their office) has almost a whole page dedicated to BFS. Also, the Cleveland Clinic which "houses" Dr. Eric Pioro, one of the world's leading ALS experts, also recognizes a "clinical entity" called benign fasciculation syndrome (with or without cramps)

I've also seen neuro's state that ALS begins only in certain muscles, and many people suffering with it have stated otherwise.

I guess my point is as someone stated above, that various docs will have various opinions.

Just know that you are ok

Ginny

ginlyn,
i think i need to send that textbook to my "neuro to the stars" and get my appointment for free my insurance is surely getting sick of all the payments by now!
mel

You know what mel? You SHOULD copy that page or two in that journal and send it to that doctor, just to show him he was wrong and to possibly help him realize there IS a syndrome out there called BFS that a LOT of people have. Maybe it will help him to not spew that bogus information out again to some poor, new BFS patient needing an answer!

Also, We have to keep in mind with "facts" on BFS and ALS and any other diseases and such. There are "rules of thumb" in most cases, but there are also some that have symptoms and such that are a bit "outside the lines". What I mean by this is along these lines; Many people get colds and the flu and we think nothing of it. There are also tens of thousands and even some years, hundreds of thousands of people that die from colds, food poisioning, the flu and many "basic" ailments that we don't even give a second thought to.

As GinLyn said "I've also seen neuro's state that ALS begins only in certain muscles, and many people suffering with it have stated otherwise. ". This is true, and even the big Mayo Study a few years back had info like this, but it is because what the patient first noticed and what was actually "clinically" already in progress were two different things.

Just because an ALS patient notices a shrinking muscle in his hand, certainly doesn't mean he didn't already have ALS runing it's course in a much larger muscle before that. It's just that the bigger muscle was so large, it obviously takes much longer for the disease to "show-up" befor the patient actually noticed it.

The small hand muscle wasted away much faster, simply because it is so much smaller of an area. So when the patient goes in to see the neuro, and says; "it started in my hand". Well, just because the patient says it started there, certainly doesn't mean that's actually where it began running its course.

This is why there were so many arguements about ALS "presenting" with twitches only at first in a few people. Well, that's because that's what they noticed first, but that was before they had their EMG's (which were ALL abnormal of course), and it was in alarger muscle mass so they didn't see any obvious signs of wasting before they happened to notice their twitches. Clinically though, it was there all along so ALS has indeed NOT presented with any twitches yet... "clinically".

We just have to take everything at face value and consider the information and how it was taken and analized, then get the facts from there, but this is excatly why you hear things like ;"I've also seen neuro's state that ALS begins only in certain muscles, and many people suffering with it have stated otherwise."

Who do you think really knows the facts, the doctor who sees this stuff on a daily basis and has VERY sensitive tests for it, or the patient who may, or may not have happened to notice his first real symptoms?

It's knowing these facts, and how things like BFS and ALS work that help us understand that with certain symptoms, you don't need to worry about ALS and other symptoms, you just might want to go see a doctor.

So far, I have not seen (or heard of) ONE SINGLE person get ALS from BFS, or get crippled from it or anything of the sort. And out of ALL the people on this web site, I have not seen one person actually have ALS... it is that rare!

Alonzo,

I can't remember (sorry), but did you have an EMG done?

Ginny

Mel,
That's great news! He told you there is nothing seriously wrong with you! Not in so many words, but that is what he said. 3 doctors later and you should be totally convinced you are fine. When you get the clean EMG next week you will feel even better.

I think what we need to understand is very rarley will you have a doctor say that they are 100% convinced of anything. They open themselves up to liabilities then. So when they say something like "I am 99% sure you're fine and we should do this test just to confirm", then we should be convinced we are fine. They have to cover their butt in today's "sue happy" society. So what your 3 doctors have told you is about as good as it is going to get for you. Don't let that very slight opening or loophole that a doctor will give you, get to you mentally. They are doing that to cover their butt.

With that said, I know it's easier siad than done. Just keep believing that you are alright and you will start feeling better mentally and physically very soon.

Again, glad to hear about another good appointment and please let us know when your next EMG comes up clean again.

thanks wolverine, i appreciate all you positive thoughts, and know (in my rational mind/alter ego) that this is so true. i will let everyone know about the emg next week, and any additional information i get from him that others may be interested in.

mel