Calling Twitchydoc and Bobajojo - can you reconcile opinion?

[Scaredlin]

Since I started this thread, I feel compelled to end it, or to chime it as it nears its close.

I tried to post this last night but somehow it got lost.

Thank you LIttle Lost, TD, Rob J, Matt, and countless other veterans on this cite who continue to post the most accurate and up to date information possible, as scary as it might be for some of us newbies to take.

Little Lost, you mention health anxiety, and unfortunately, thats the category I fall into and there is perhaps no worst disease than this, where you can't get a 100% answer from a blood test or scan, etc. and where waiting seems to be part of the beast. So despite all of your assurances re: my bulbar fear, I am petrified. Because of this, I've been posting a lot and stirring the pot, unintentionally with my queries. My issue is not just twitching (neck spasms, weird head/mouth cheek/tongue/ear pressures). Maybe I would be okay if it were just the twitching. But my overactive mind has cobbled together some atypical manifestation of bulbar b/c of the neck and head stuff. And all this has been going on for 7 months (twitching just 6 weeks), and I am undiagnosed despite lumbar punctures, 3 brain MRI's, cervical MRI, eeg, emg and more blood tests than you can imagine. They say fibromyalgia with myofascial pain issues, some bad cervical herniations, TMJ + BFS. I just don't buy it, and I guess that's my problem. It seems too wishy washy cobbled together diagnosis, like we don't know, so just go away. That kind of diagnosis in the mind of a health anxiety sufferer = something sinister still lurking. Ive said this before, if I know what Im up against Im as tough as nails- had open heart surgery 5 years ago to repair a leaky valve and didn't google it once or get nervous about it - because it was so straightforward and KNOWN. This is a whole other entity.

I just want to thank you all and encourage you to post everything you need to post. I realize I am not in a place to process anything you are saying, b/c I am processing simply out of a place of fear. I am hoping that will change with some time and perspective. Ive got a teen and two toddlers and am sucking the joy our of my family. My babies have their first Disney trip in a few weeks and Ive got to pull it together with some modicum of happiness.

Scaredlin

[js1]

Good thoughts on this thread; I'll add my own. I started with widespread symptoms (not just twitching, but muscle fatigue, etc.). I've experienced everything from trouble articulating words to continuous, small twitches I'm only able to see with a light. I've been seeing a neuromuscular specialist at Cedars, and he's seen over 1,000 ALS patients. I've read most of the studies referenced in this forum, and I even submitted my case to Dr. Carvalho (videos and all) for his BFS study.

I, like many of you, fell into the trap of worrying about bulbar after I was "cleared" of limb concerns. This has taken up nearly 8 months of my life; it has affected my work; and, it has made those around me miserable. The bottom line is this: We will find the things we search for in degrees relative to the amount we search. During my last EMG, as I was directing my doctor on which muscles to poke, he told me the difference between us: He was looking for nothing and I was looking for something. He's right, and I think this applies to most everyone here. We have to stop searching for exceptions, for caveats, for diseases we don't have any clinical signs of. Otherwise, the cycle will repeat itself viciously. I don't want to be in my mid-30s and realize I've wasted the past 7 years fretting over something that wasn't causing me any trouble at the time. Indeed, many people who actually suffer from awful diseases do not live like this -- they enjoy the time they've been given. While some reassurance helps, arguing over medical intricacies is far over 99% of our pay grades.

I hope you all can find some peace.

[RobJ]

I bet our grandfathers and great grandfathers twitched, just never said anything....

[wjjw]

Regarding the subject of the present topic, I think that nothing drastically changed before and after 2010. Even in the 1960 study concerning fasciculation it was mentioned that 20 years prior to the study, the consensus was that twitching means MND. I found many posts here from 2005, 2006 and 2007 mentioning cases and studies about twitching with no weakness being an early sign of MND. The question is what is the percentage of those twitchers with no weakness who ends up developing ALS. Scientific studies are important because they explore rare presentation of diseases, but by definition a rare presentation is rare and applies to a very minority of people. The motto: “Twitching without weakness means no ALS” still apply to the overwhelming majority of cases. And if I’m wrong so let’s put a new sticky on this board for newbies saying: Dear terrified newbie If you start twitching without weakness don’t bother seeing a doc, doing clinical tests or an EMG, because anything you do will still be questionable, unless 12 full months have passed from the onset of your symptoms. In my humble opinion a simple clinical still rules out ALS in 90% of the cases. Now a rare presentation of a very rare disease is still extremely interesting in an academic and research context but practically it remains….very rare.

I pretty much agree with this. When I was hit with this crap in 2005 and experienced the sudden and bizare symptom onset, I landed right where we all did, and briefly thought I'd be long dead by now. But after finding this site and recognizing the amazingly accurate descriptions, similarities and patterns of BFS discussed in great detail here, I came to the conslusion that BFS was a much better fit--and by a long-shot. Back then, the Walton study, the possibility of twitching before weakness, and other "scary" stories and individual cases from ALS forums was discussed, debated, and analyzed as I'm sure it will continue to be. I am all for giving people accurate information, discussing everything, and not sugar-coating the facts. Really (I do however, lose patience with people who submit "freak out" posts after having been at this this for years, and should know better, and be more sensitive to new comers who may be in a fragile mental state).

I've personally learned to trust my own common sense, reasoning, and intuition, regardless of the subject matter. I don't take important issues lightly, and I carefully reserve judgement on assertions that people make, whether it's dealing with science, religion, health, or any other important topic relating to life and death. I don't have a medical background and I have no idea how to read an EMG or interpret detailed technical analysis of the waveform patterns, nor do I care to. But I do know how to read and I can at least gather enough critical information from techincal papers to know what questions to ask of the experts, and how to at least try and assess conflicting information. For example, and without going into detail, if I had not done my own research, known what questions to ask, and known when it was time to get a second and third opinion with respect to medical treatment of preterm labor, there's a pretty good chance that one or both of my twin daughters would not be here today. So trusting your doctor is good, but blindly following "expert" advise without question can be stupid.

I've read all the papers and studies that were discussed here, as well as thousdands of posts on als fourms, and my honest opinion is that people who identify with the symptoms described in "BFS in a Nutshell" have every reason to relax and get over it, and no reason to fear that they will end up as one of the handful (literally) of case oddities that exist in medical literature. This is completely honest advise I'd give my own son if he developed BFS. Hoping its not hereditary

Cheers,
Bill

[bfshopeful]

I can tell you with 100% confidence, from years of experience, that tongue twitching in BFS is benign. 5 years here of tongue twitching and bulbar emg and it's all benign. You don't need a bulbar emg, if your twitching in limbs were from ALS the emg would find. I've been in the cycle and know the fear, but from the outside it sounds like a conversation between crazy people.

[dARR]

Seen this all before... Please remember that everything you read here and especially on complicated scientific concepts are the opinons of lay people who even with the best of intentions are not qualified to diagnose your problems. Listen to your doctors... They have been studying this stuff intensively for longer than anyone posting "scientific" opinions on this thread.

No weakness= No ALS
ALS is a rare disease if you want to spend your time worrying about a rare presentation of a rare disease then you need to reevaluate your life... Trust me Iv been there.

Darr

[edado69]

Seen this all before... Please remember that everything you read here and especially on complicated scientific concepts are the opinons of lay people who even with the best of intentions are not qualified to diagnose your problems. Listen to your doctors... They have been studying this stuff intensively for longer than anyone posting "scientific" opinions on this thread.

No weakness= No ALS
ALS is a rare disease if you want to spend your time worrying about a rare presentation of a rare disease then you need to reevaluate your life... Trust me Iv been there.

Darr

I like this.

[Little Lost]

Hello,

Just to say please don’t think I am being rude, but I can’t really answer anymore PMs regarding the scientific questions. This is because as Darr rightly pointed out to me, technically in the field of neurophysiology I am a lay person. My doctorate and 18 year career is in Immunology and Clinical Immunology (immune system disorders), and although this does encompass a field called neuroimmunology (prion disease like vCJD, etc), primary neuromuscular disorders are NOT my forte and I doubt we spent more than a few days on the subject, I have never performed an EMG and never interpreted one. Anything I know about them I have taught myself from medical books, not from experts directly. So yes I am a layperson.

Of interest I did take a career break and worked for a scientific publishing group where I had to read articles of all disciplines and discuss, i.e., comparing the findings between them. Again although this involved a good knowledge of many medical disciplines I only ever worked on one ALS paper (one that was questioning if it was actually a manifestation of a prion disease, absolutley nothing to do with diagnosis, EMGs etc). This does not in any way make me an expert.

In addition I worked on a panel which scrutinised applications for medical funding, but having an immunology background I got most of the funding applications from rheumatologists and other autoimmune conditions. I rarely dealt with any neurology except when there was a clear cross over with immunology.

So yes part of my training and career is about pulling apart science articles, finding flaws looking at concepts, experiment design, hypothesis and statistics, but again I emphasis not specifically neurophysiology. It is like getting an ENT specialist to look at the kidneys, he knows the basics, more than say a banker, but not the whole picture.

So what I said in my posts is my opinion, not an experts.

Of note though Darr did say Quote "" they are not qualified to diagnose your problems" I can honestly say in all the posts I have ever written I have NEVER attempteds to diagnose anyones problem.... so not guilty as charged to that bit. I would never have crossed that line....and I certainly did not try to diagnose anyone. Apart from that I do agree with much of his post.


So yes my intentions were right but I am technically not qualified to factually answer yor PM. Hope you understand.


. ….besides it will mean I can stop running up and down the bloody stairs to the poor neurophysiology department bugging them . It is up 4 flights of stair (silly place to put it for people with muscle disorders but that is the NHS for you). Anyway 4 flights of stairs sure started off my fasciculations.


Like many of you I also have several young children and I feel sad when I see them walking around on their heels ( doing mummy’s funny walk), or seeing how many stairs they can jump, or how many times they can squeeze their water pistols with each of their fingers. They also play hunt the fasciculations on my arms face etc. All innocent but inside I feel myself breaking with it. I try to hide it from them but they pick up don’t they. It is amazing how this fear can make you push away the very things you fear losing the most. I hope you have better luck controlling your fears than I ever did.

Helen x

“Millions saw the apple fall, Newton was the only one who asked why?”

[seventhcandle]

I am no doctor, but I know FPs are detected often in people without BFS. I spoke to a neurophysiologist who works with me at my college and she said muscles twitch because if they didn't, we'd all be paralyzed, or something to that effect. Muscles are always twitching at the microcellular level whether we feel it or not. Yes, the way we twitch where we feel so many of them does indicate that we have a lower FP threshhold than non-BFSers, but it is most likely due to an intracellular dysfunction caused by a combination of things, including a possible genetic predisposition. The bottom line is, and always will be, twitching by itself is harmless and possibly a NECESSARY function of muscles. In other words, there is no way to stop muscle twitching because if you did, you'd be long dead.

That being said, I've never once worried about having MS or ALS since I started twitching. Maybe I was lucky enough to have a severe explosive onset of BFS after a very traumatic run with excessive stress, sleep deprivation, and a nervous system gone awry. I just knew it was nothing nasty. I did fiddle around with the idea of it being autoimmune at one point, like a mild form of neuromyotonia, but my neuro reassured me with autoimmune disorders, you'd see an elevated WBC etc. and I had none of those presenting factors, so I didn't have to worry about that either! I feel like spending all this time worrying about ALS is a waste of time. I know a guy at the karaoke bar I go to who has ALS and he cannot move. He is in a wheelchair and is going to die soon, according to his docs. He's only had it this bad for a few years, and **** ALS progresses fast! CLINICAL WEAKNESS (weakness that is so severe you wouldn't be able to sit here and type on this forum!), I repeat, is the presenting factor in ALS and NOT twitching. TWITCHING MEANS NOTHING!!! If it means anything at all, it means YOUR MUSCLES ARE FUNCTIONING PROPERLY. Your "twitching" is just amplified due to a BENIGN intracellular dysfunction. You will NEVER be able to find the cause or causes of that dysfunction. NEVER. I would bet my life on it.

People worrying about ALS all the time need to go to a psychiatrist and get treated for their ANXIETY which is revving up an already revved up nervous system. ANXIETY is the problem. I had 8 neuros tell me the same thing. Yes, I got diagnosed with RLS too, but my problem was, still is, and will always be dealing with my ANXIETY. My ANXIETY even caused me to have a plethora of food, light, and scent sensitivities. I developed "environmental illness" from having so much *beep* ANXIETY. Time, exercise, and accepting you have a benign condition are the only things that help.

That being said, my main struggle with this BFS condition is how ANNOYING the twitches are. I realize that there is nothing I can do to make them go away, but they annoy me a lot sometimes and I wish I could reduce them.

Instead of us wasting time worrying about ALS, I feel like we should try to focus our efforts on trying to get the medical community to follow in the shoes of Dr. Thamoush and try to develop more effective treatments for reducing the amplitude of our twitches. Kinda like they've done with headaches. BFS is benign just like a headache is benign, but there are effective treatments for most headaches. The only thing that is definitely not benign about BFS is the anxiety is causes as well.

So, as I see it, we cannot disregard the fact that BFS is very annoying and the psychological battle with it is the most annoying part of it. Treat the anxiety and maybe you won't care about the twitches anymore? That works for most. But there are others who find symptomatic relief from some of the meds out there. I see nothing wrong with either approach. I'm still on the fence as to whether or not I'm gonna give meds like Lamictal a try some day.

[RobJ]

People seem to "hang" on clinical weakness. You get diagnosed when you have clinical weakness but MND could be lurking for sometime. MND can sneak up on you. But not how 99.999999% of the people on here explain. Jumping around on -1- leg to test weakness, or doing push ups sometimes -1- handed, or feeling tire after a walk, not the type of weakness.

It's not like that...not the weakness you think. It's the very subtle things, like one day you notice your left thumb can't press as hard on the remote to disarm you car, or you right hand can't open the jar on the peanut butter, or you find yourself tripping over things more often...now don't freak out, if you've been jumping around on -1- leg and you start tripping it's because you never jump on one leg and you are using muscles you've never used.......

Be concerned when one day you notice that you can't do a function you could before and you are twitching. Atrophy and clinical weakness take sometime.

It's not the flash bang described here, one day you walk fine, next day foot drop. Lot's of subtle changes.

So again, don't go freak out. People use the term perceived weakness. It's a crock, it's not weakness. Steve Gleason noticed something was wrong when he attempted to do pull ups and struggled to do 3 when he could do 50. I would bet he had lot's of signs prior to that. Lou Gehrig may of had the disease for longer that initially thought. He couldn't hit the baseball as well or field as well, but he knew there was something wrong.

You will know when you have weakness, very subtle, but you know when you heart skips a beat..........you will know. You won't need to ask someone or prove to yourself there is no weakness.

[dARR]

Apologies. I have to admit I disn't read all the posts on this thread. My post above was general advice and aimed in the main at twitchydoc who with the best of intentions has a long and coloured history of posting scientific facts he is not qualified to interpret as gospel.

No offence was meant.

[TwitchyDoc]

Darr, as a neuropathologist I am more qualified than regular neurologist as I professionaly deal with disease processes.

I am not surprised when you said you had not read it all - that is typical in people like you. Helen herself mentioned thath my explanation/science was better then hers but yeah, you did not read it, you only complain. I wonder how simple some people can be.

[RGB]

Here is one further medical fact to add to this fascinating discussion. If you have widespread twitching and have had a clean EMG of 4 limbs between 3 and 6 months of onset then the chance that you will die of cardiovascular disease is about 30%

My point is that you may well do better going for a run than becoming worried about the nth decimal place risk of ALS (and I've read the scariest papers and the scariest comments here and still conclude that is what we are talking about for anyone who has seen a decent neurologist.).

RGB

[edado69]

What a "mature" post! And yes, you are 100% right: "we cannot disregard the fact that BFS is very annoying and the psychological battle with it is the most annoying part of it...".
Twitching may be severe enough to be really annoying and disruptive. You really would like them to stop.
Yesterday evening, when my jumper was pumping above my left shoulder so that my wife could pick on it being a couple of meters far away, or this morning when the left leg could not stop pumping and stopped me to get a couple of hours of deserved sleep...
I also do undertand Twitchydoc. He is trying to present facts and he is puzzled by what has been described as a "preclinical phase". But, I bet, himself could not find much evidence of it looking at patients he may have encountered. In all cases, I am sure, there was something else ongoing. Namely, weakness. Perhaps, not severe, but there...Or, abnormal reflexes.
I am not making any criticism. In fact, I argue that if you study a phenomenon, you always HAVE to question: why is this happening. How does it start? When doe it start?
In other words, I welcome the input Twitchydoc has always been trying to give to this board and I can see sense in all the above posts as well.

[dARR]

Everyone is a Neuropathologist on the internet.