Update from a future Family Doc with BFS

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Update from a future Family Doc with BFS

Postby futureGP1983 on April 23rd, 2015, 10:50 pm

Hi everyone, I just thought I’d send everyone a ‘positive’ update.
Just to provide some context, I’m a 31 year old male and well into my 3rd year of BFS. I am also nearly done my training as a family physician, so obviously have quite a bit of medical perspective.
Lots has already been said on this board, and we all know the terrible complications of this miserable syndrome (crippling anxiety, somatization [ability to manifest real clinic symptoms through the mind-body interaction], catastrophizing, “I’m the exception” or “how long” example, etc…). As such, I’ll try to keep my post relatively short, but hopefully some of this will help a few of you.
1. ALS is terrible, but rare, disease. It is not subtle. Fasciculation’s are the least noticeable features of the disease for someone with ALS. The classic patient is someone in their 60’s or 70’s, who for the past couple of months, has fallen multiple times secondary to unexplained ‘foot drop,’ and who can now no longer write with a pen. There is no ‘subjective’ weakness in ALS – it is progressive, unrelenting (e.g., does not wax and wayne), and accompanied by a myriad of symptoms that make cramping/fasiculations the least of a patient’s chief complaint.
2. From a doctor’s perspective, we hardly ever think about ALS, because honestly, it is so rare. I have now seen easily 10 patients in my career who I have thought about the possibility of MND/ALS simply because of their overt symptoms (age (70+), and my own experience). In all cases, eyes have been rolled by my preceptors (simply because it is virtually never encountered in clinical practice) and sure enough, investigations have always led to very different diagnoses. Simply put: muscle cramping, weakness, atrophy, fasiculations, reflex changes, etc…etc…have so many OTHER explanations than ALS/MND, that it is still rarely thought of by doctors. Honestly, the ‘ice bucket’ challenge brought more to my colleagues awareness of ALS than all of medical school combined (and I went to a very good medical school btw, lol)
3. Virtually NO PHYSICIAN (including MANY neurologists) know anything about Benign Fasciculation Syndrome (or the devastating effect it has on sufferers). Really, this condition needs to be studied much more thoroughly and addressed in PSYCHIATRY (rather than neurology) because of its truly life-altering consequences (personally, I STILL suffer from crippling anxiety. Unfortunately, once you get ‘over’ BFS, you just find a new health issue to perseverate on). As such, don’t necessarily count on your family physician or neurologist to even know about BFS. Even worst (especially in the USA or Canada), you can expect your physician to perhaps employ the “watch and wait” or the “can’t be 100% positive” approach, simply because medico-legal consequences of a “wrong diagnosis” are so engrained into our basic training. Take this in stride, and recognize that BFS is a “real” entity (trust me, I’m all about ‘evidence based medicine’). Honestly, we don’t know much about the syndrome other than that it is physiologically benign (psychologically however is a complete different story).
4. My simple advice for NEW fasiculators/twitchers:
A) This condition many very well never go away. It sucks, but you will learn to deal with it. You may twitch all over, without rhyme or reason (one “hot spot” for months to years, or random twitching all over). You may cramp, you may get fatigued, you may “feel” weak, you may find dents or differences in muscle sizes (you may even atrophy!), or you may get a wide range of other ‘weird’ syndromes. When symptoms get worst, talk to your family doctor, but don’t go seeking a diagnosis of ALS. I can’t even begin to tell you the number of different, COMMON, conditions that can cause progression of neurological symptoms (everything from spinal stenosis to myasthenia gravis!). In my opinion though, new potential BFS sufferers should ask their family physician for the following before going any further:
CBC, electrolytes (including Mg, Ca, PO4), TSH, B12, Folate, Cr, ALT, cholesterol (good to know anyway) +/- TTG/IgA (celiac disease) ONLY. If all clear, stop investigating and start ‘dealing’ with this annoying (but not pathological) disorder.
B) DO NOT, I repeat, DO NOT, get an EMG or MRI, without true neurological weakness. If a neurologist looks hard enough, they WILL find something wrong with everyone (7/10 of us can apparently show at least one fasiculation on EMG if tested for 30+ minutes). I for one, had a completely normal EMG, except for a few fasciculation’s, and a SHARP wave in my gastrocnemius. What a wonderful 9 months of worrying that resulted in (despite repeated assurances from 2 incredibly competent neurologist that all way good). Sharp waves/fibrillations sound very serious, but again, have multiple explanations (in my case, likely from over exercising, but lots of other possibilities, including foramen narrowing, stenosis, etc…).
C) You are not alone. I spoke to an EMG technician a few weeks ago (this person had no idea about my own history) while on a movement disorder rotation, and he was actually joking about the number of PHYSICIANS he would literally see monthly with “new muscle twitching” who were terrified they may have MND. From the technician’s perspective, this was quite amusing (although not to me, as I had been one of those individuals in the past). Physicians are sort of hypocrites – we love to reassure, but when WE start to develop symptoms, you better believe we want answers ASAP (lol).
D) STAY OFF GOGGLE AND SCHOLARILY JOURNALS. As a training physician, I literally have access to every medical journal and article out there (way beyond google scholar). I’ve had a look ‘out there’ at any potential ‘scary publication’ and truthfully, I’m not impressed. There are only a few (e.g., 4—7) true CASE REPORTS of what we all fear in the entire literature (from the 1990’s onwards), and frankly, with these sort of numbers, you really have to start taking into account probability and statistics (e.g., even though ALS has an incidence, of let’s say, 1-2/100,000, given the number of individuals who develop benign fasciculation syndrome yearly [let’s guess, 150/100,000?] => unfortunately, a very small number of those may also develop statistically spontaneous ALS). In other words, correlation, simply does not mean causation (and I have seen nothing in the literature over the past 15 years to suggest otherwise). Again, I don't want to mince words for those who don't have a strong background in statistics. All I'm trying to say is that, unfortunately, based on RANDOM chance alone, some individuals may approach their physician first with a complaint of weird fasiculations a few months (or years) before they are diagnosed with ALS. This does NOT however mean that the fasiculations were precursors to ALS (in fact, quite the opposite of what we know about MND) but rather, secondary to random chance alone. I'm sure, for instance, if we looked hard enough, we could easily find 4-7 ALS patients who had pneumonia 6 months prior to their ALS diagnosis. This does NOT mean that their pneumonia caused (or was a precursor) to their ALS. All of you need to start looking at your fasiculations the same way. I guarantee you I could produce a study showing that 50% of all ALS patients has a viral cold 12 months before their diagnosis. Are you going to worry next time you get a cold? Why would your fasiculations be any different? Simply, fasiculations +/- cramping do NOT statistically (even remotely) equal ALS.

In summary, please:
-Recognize BFS for what it is – a pathologically unknown, ‘mind-body’ interaction with a HUGE myriad a CHANGING symptoms - the most severe of which is psychological (and truthfully, can be VERY severe).
-Don’t expect physicians to know much about BFS. It is considered a ‘functional’ disorder, and we spend most of our training learning about ‘organic’ disorders (simply because there is so much to know). Doesn’t mean it isn’t ‘real’ or affects many lives (e.g., just ask someone with severe IBS, fibromyalgia, or migraine associated vertigo).
-If you have BFS +/- cramps +/- the changing, million+one symptoms that go with it – I’m sorry, this sucks (trust me). There is no cure at present time and you may have this for many years to come (even if your ‘anxiety’ gets under control). You may unfortunately need anti-depressants or a benzodiapiene (as needed) to cope + therapy. This disorder can be like a wave, and if you are not careful, it is going to result in other, perhaps more serious, mental health problems.
But, take this doctor’s advice – ALS is not subtle. If you are twitching/cramping right now + whatever else weird/persistent symptom you have (but can still walk and hold a cup of coffee), this is NOT MND. You have either BFS, or some other condition that may (or may not) be worth investigation…(e.g., from B12 deficiency to spinal stenosis).
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Re: Update from a future Family Doc with BFS

Postby leaflea on April 23rd, 2015, 11:59 pm

Thanks future GP for stopping by, you know what a valuable post this will be to many. And congrats! I always thinks the med students who have had experiences like this will make the very best physicians.
Matthew 6:27 Who of you by worrying can add a single hour to his life?
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Re: Update from a future Family Doc with BFS

Postby nickston on April 24th, 2015, 12:11 am

gary, please consider making this a sticky.
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Re: Update from a future Family Doc with BFS

Postby MarioMangler on April 24th, 2015, 1:01 am

Well said. To me the biggest problem with BFS and this board in general is that way too many people go out and get EMGs, and once they have done that step they have now convinced themselves that they are sick. If you never even bother with an EMG (which isn't going to tell you anything anyway), you have a big head start over everyone else when it comes to dealing with what BFS is.
BFS FAQ:
1. No, that's not bulbar
2. No, the location doesn't matter
3. Yes, we have all had that symptom
4. No, you're not the exception
5. No, that's not ominous
6. No, you don't need an EMG
7. Yes, you will be fine
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Re: Update from a future Family Doc with BFS

Postby misterjuanperalta on April 24th, 2015, 5:24 am

In the bloodwork described above, other considerations to include are:

PTH, ACHR, GACHR, RNA, VGKC(LE), VGCC, ANTI-MUSK

Regards
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Re: Update from a future Family Doc with BFS

Postby leaflea on April 24th, 2015, 8:05 am

I agree on those labs above, but some (VCKG) are very difficult to get - only two labs in the whole USA do that one - and expensive. Not sure if anyone here has had a positve VCKG. Sometimes it only leads to more confusion. I did get one and it was .01 and normal range is .00-.02. So, I'm in the normal range, right? But my level on about 20 other neural anti-bodies were all .00. It just casts a tinge of doubt for me along with my AChR of 21% when normal range is 0-20% in some labs and 0-25% in others. Just this week on a routine CBC an incidental .62 Absolute Lymphocite (low) finding adds to this picture as it can be down in Myasthenia Gravis also. I don't think I've had that Anti-Musk. Anyone know if ANA or anything else would be elevated in Myasthenia Gravis?

Meanwhile, I think I've had enough blood tests in the past two years to see that my symptoms are worse when calcium is flagged as low vs higher end of normal range. TUMS chewables brought it up rather quickly.
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Re: Update from a future Family Doc with BFS

Postby volfan on April 24th, 2015, 10:06 am

great post and wonderful info. For me, however, having the EMG was a good thing. Yes - I confess that I still worried (still have my "oh crap" moments even now) after that some. But, by and large, it gave me a peace of mind that I know I would not have had without it. I did have an office neurology exam initially and the doctor point blank told me that I had BFS, wrote it in my chart, and still ordered an EMG for me as well as an MRI. She may have done it to cover her own fanny, but I was happy to get both and to hear that the results showed nothing to be concerned about. The doctor told me that the results of the EMG were "good" for up to five years (that was three years ago), but that for now I needed to go away and not come back. Hearing that was like finding a pot of gold at the end of a rainbow for me. I know that unless I see/experience the things you described so well in your post, I won't go back ever. I hate needles. :)
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Re: Update from a future Family Doc with BFS

Postby futureGP1983 on April 24th, 2015, 10:49 am

misterjuanperalta wrote:In the bloodwork described above, other considerations to include are:

PTH, ACHR, GACHR, RNA, VGKC(LE), VGCC, ANTI-MUSK

Regards


Personally, I think those are pretty advanced tests and although may have some utility from a sensitivity perspective (ruling out certain diseases), they don't have great specificity (e.g., what does one now 'do' with a 'positive' result - keeping in mind again that lab tests 'normal values' also exist on a standardized range).

In Canada, we are trained to be extremely selective on investigations that we order - not because we don't have access to these advanced tests (or knowledge of them), but because we recognize the harm that can come of false-positives or low specificity tests. Even the College of Family Physicians has come out against routine PSA screening for prostate cancer now because of the insanely high number needed to screen (n=260+), unacceptable rate of false-positives, and the many complications that come from further work-up (e.g., prostate biopsy). A urologist, who sees prostate cancer on a daily basis, has a very different perspective - but from a family doctor's perspective, we are very wary about initial screening with low specificity tests such as above that do have the potential for harm.

As such, if you a simple BFS'er +/- cramps, then yes, I would still only start with a CBC, extended lytes (if Ca is out of wack, then check PTH), Cr, B12, Folate, ALT, and TSH.

If you are having symptoms that suggest the possibility of a TRUE myopathy or myositis (or some other rheumatological condition), then yes, additional work-up may be appropriate (e.g., CK, ANA/ENA, ACHR, etc...). I wouldn't initially though go asking (or even seeking) the tests above and if you do, make sure you are prepared for the possibility of a positive test (What then does that mean? Again, a major problem with non-specific tests).
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Re: Update from a future Family Doc with BFS

Postby mwagner on April 24th, 2015, 10:50 am

This is one of the best posts I have read in so long. Thank you for posting this and putting things in perspective for us twitchers!
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Re: Update from a future Family Doc with BFS

Postby Buzznerd123 on April 24th, 2015, 11:21 am

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Last edited by Buzznerd123 on May 1st, 2016, 12:05 pm, edited 1 time in total.
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Re: Update from a future Family Doc with BFS

Postby Ghayes420 on April 24th, 2015, 11:32 am

Thanks for your positive opinions @futureGP1983!

As a fellow BFS'er with fascics and even a rare fibrillation on EMG I appreciate your comments and suggestions and agree with most all of them.
While I also agree that an EMG is not warranted in a majority of cases, good luck going to a University hospital or the Mayo Clinic and not have one ordered IF you are able to show fasciculations visibly on the clinical exam. That is pretty much standard operating procedure if fascics are visible during clinical, specifically in the upper extremities.

I was curious as to your fascicualtion presentation and if your fascics were confined to mostly lower body fascics? Were you able to show your fasciculations visibly in any upper extremities during your clinical evaluation?

Thanks again for your opinions on BFS and sharing the positive outlook with other members!

-G
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Re: Update from a future Family Doc with BFS

Postby futureGP1983 on April 24th, 2015, 12:04 pm

Ghayes420 wrote:Thanks for your positive opinions @futureGP1983!

As a fellow BFS'er with fascics and even a rare fibrillation on EMG I appreciate your comments and suggestions and agree with most all of them.
While I also agree that an EMG is not warranted in a majority of cases, good luck going to a University hospital or the Mayo Clinic and not have one ordered IF you are able to show fasciculations visibly on the clinical exam. That is pretty much standard operating procedure if fascics are visible during clinical, specifically in the upper extremities.

I was curious as to your fascicualtion presentation and if your fascics were confined to mostly lower body fascics? Were you able to show your fasciculations visibly in any upper extremities during your clinical evaluation?

Thanks again for your opinions on BFS and sharing the positive outlook with other members!

-G


Hi Ghayes420 - my initial presentation was pretty typically. Started with a bought of eye twitching for 2 weeks, and then a month or two later started with full-body fasciculations (arms, abds, legs, everything). Most of my fasiculations are now focused in my calves, and they are 24/7 (can literally see them any time I look). My legs also have this constant 'buzzing' feeling, but I have just learnt to ignore everything now. As mentioned though, 1 PSW in the calve was identified and a few FP's (I believe in my arms). I actually can't believe they didn't find more to be honest.

Other symptoms were also very 'typically' - "subjective weakness" "constant strength checking" "new dents??? new atrophy???" "fatigue" "psychological meltdowns and panic attacks" etc....

As for the anxiety - it's a great question. Certainly I think I've always had some GAD but this disorder definitely kicked things into high gear for me 3+ years ago. Of interest, I haven't thought much about BFS/MND for the past year because I've been dealing with (what I believe) to be Migraine Associated Vertigo (constant rocking dizziness - it is terrible :( )...another nebulous, debilitating, 'functional' disorder that has really detracted from my quality of life, but mostly from a psychological perspective. Again though, all I've done is switched from one disorder to perseverate (?somatize) on another. Frankly, I blame my severe anxiety disorder [initiated by BFS???] on this!

I suppose that is really why I wanted to write this update post - essentially to 'warn' new BFS'ers about the very real and worsening mental health/psychological effects this 'syndrome' can have (never mind the physiological symptoms that is accompanied with the constant state of 'fight or flight' we are all now in...I don't even want to KNOW why my cortisol level is like). A constant state of 'believing' one is dying will start to have very significant psychological ramifications on the mind and so I encourage many new 'classic' BFS'ers to STOP investigating (after ruling out simple/common issues like vitamin deficiencies, electrolyte imbalances, thyroid disturbance, etc...). Really consider doing this before things spiral out of control.

General thoughts again:
1. Fasiculations are common. BFS is a 'functional pathology' of constant fasiculations +/- cramps that seems to have a predilection for already hyper-anxious/vigilant individuals. The psychological sequalae (I believe) however, can be lasting and significant consequences if not properly dealt with.
2. Case reports of what we all fear are scarce, and just that, case reports. All case reports are published because they are 'interesting to the medical community' since they represent exceptions to the rule. My general feeling again, based on probability alone, is that there are enough BFS'ers (or mild-severe twitchers) out in the population that random chance dictates some will also get ALS (but no more than the pre-test incident likelihood of 1-2/100,000 for anyone else). In other words, correlation does not equal causation in the situation of benign fasiculations (e.g., no weakness) and MND. Of interest, even in the case of fasiculations + true weakness, the differential of etiologies STILL puts MND VERY low down the list. On at least two scenarios where I was CONVINCED a patient had ALS, I was proven dead wrong (and I mean convinced => 70 year olds [remember ALS drastically increases after age 70, and is still included in 1-2/100000 incidence!] with new emotional lability, dysphagia, objective clinical weakness, fasciulations, upgoing plantars, etc...). Most of the family doctors I have worked with have never even seen a case of MND - it is THAT rare!
3. BFS sucks - the physical symptoms may never go away and the type of symptoms you have can change. However, you will learn to adjust and cope, and eventually, the less time you spend thinking about, the less you will notice your symptoms.
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Re: Update from a future Family Doc with BFS

Postby Ghayes420 on April 24th, 2015, 12:47 pm

Great posting and appreciate the thorough feedback @futureGP1983

Gary, let's sticky this one.
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Re: Update from a future Family Doc with BFS

Postby futureGP1983 on April 24th, 2015, 1:17 pm

Thanks for the compliments everyone, but I'd almost prefer not to have this as a "sticky." I'm happy to provide my own experience and perspective (and obviously have this as a post in the support group for people to read), but I do have to be a bit cautious about giving out 'medical advice' on a public platform (again, that whole 'medico-legal' thing I referred too in the previous post still unfortunately applies to me as well). Please, see and make decisions together with your own medical professional that are best suited for your own care :)
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Re: Update from a future Family Doc with BFS

Postby Ghayes420 on April 24th, 2015, 1:21 pm

Too late futureGP, I already spoke with your malpractice insurance carrier and due to your posting your premiums just increased 23% in the first year. :)
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