Calling Twitchydoc and Bobajojo - can you reconcile opinion?

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Re: Calling Twitchydoc and Bobajojo - can you reconcile opin

Postby RobJ on February 18th, 2014, 3:21 pm

Any doctor giving you an EMG without clinical weakness is wasting your time. No such data exists that an EMG can prove the existence of the disease before weakness. It's a crock.

Why would you get an EMG prior to weakness? Why would a doctor allow you to get one? Weakness is the hallmark sign, no weakness, no disease.

You know I suffer from old age, might as well give me and cath now, to make sure I'll never get a heart attack.

Makes no sense.

When you wake up and have weakness, then get the EMG. 99% of the time, the doctor knows you have it. Doesn't need the EMG.
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Re: Calling Twitchydoc and Bobajojo - can you reconcile opin

Postby Rothhaar on February 18th, 2014, 3:33 pm

RobJ wrote:Any doctor giving you an EMG without clinical weakness is wasting your time.


I hope you are right and the general neurologist I consulted said the same.
But if you are right, then why do so many neuromuscular specialists still do EMG's after a completely clean clinical exam?

And why are so many people here on the forum obsessed by EMG's and insist that EMG's are necessary, at least to rule out a future outbreak of the disease.
IIRC some days ago Yulia for example wrote something like "If you had only a clean clinical exam, then you still have to wait for another 6-8 months to be sure you don't have **S. If you had clean EMG's in several limbs, however, you don't have to wait to be sure you don't have it."
Again, if you are right, this statement is wrong and the other way round.

Please just tell me who is right and who is wrong. I'm confronted with these contradictory opinions ever since I came to this forum.

I really start to wish that I had never found this forum. If I had just been to a neurologist I would be fine, but over the course of the last couple of weeks some statements here have made me questioning everything he said. It's not reassurance what you get here, but the contrary. And I think, I'm not the only one here to experience this (cf. Scaredlin and veryworried).
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Re: Calling Twitchydoc and Bobajojo - can you reconcile opin

Postby RobJ on February 18th, 2014, 4:59 pm

If you had an EMG and the EMG was positive for the "signs" of the dreaded disease but you didn't have weakness, would you have the disease?

if you had an EMG and the EMG was negative for the "signs" of the dreaded disease but you had weakness, would you have the disease?

If you had an EMG and the EMG was positive for the "signs" of the dreaded disease and you had weakness, would you have the disease?

My point being, you would need weakness, without weakness you've got a positive EMG that's all.

Why would you want to have an EMG that can't prove you don't have the disease?
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Re: Calling Twitchydoc and Bobajojo - can you reconcile opin

Postby Little Lost on February 18th, 2014, 5:33 pm

Hi
What a commotion.

Rothhaa.

Perhaps you are not reading things correctly so are seeing more contradiction than there actually is. Nothing in science or medicine is black and white, noone can give all the correct 100% water tight answers you are desperate to get. I find myself being accussed by yourself of contradictions in my last post, but I fail to see this. Let me answer what you have asked me.

Sorry but could you tell me where in my post I QUOTE " stated that 30 seconds are not enough to show pathological changes". !!!!!! Pardon me but where do I ever say pathological changes. I thought I was talking about 30s in RELAXED muscle often not being enough to show FASCICULATIONS, which as you know are not on their own a pathological change, not even close. Some of the nasty pathological EMG signs you are talking about, can’t be detected in relaxed muscle, they are measured in contracting muscle for goodness sake. Nothing to do with a needle in relaxed muscle. Why do you make such a huge leap? You are taking a flea and creating a dragon. From fasciculations to pathological changes. 2 different subjects completely. For example if I say a banana (fasciculations) takes 90s to ripen, you can’t then take this statement and shout ON THIS FORUM “Little Lost said that all these different fruits in all this different baskets (i.e. all the negative EMG signs), will take 90s to ripen and if they don’t then they aren’t true fruits and we are all doomed.

Also how did you conclude this from my post? YOUR QUOTE.... “you (lITTLE lOST) basically said that for a valid EMG the needles must be stuck in the muscle for 90 seconds and up to 3 minutes.” Rothhaa Basically I was saying nothing of the sort Pardon ??????? . This conclusion beggars belief. Again I was talking about FASCICULATION only!!!!! Yet here is an over dramatised interpretation of my real statement It goes from “ To detect FP the needle should be in 90s to 3 mins” to THE WHOLE TEST IS INVALID IF THE NEEDLE IS NOT LEFT IN RELAXCED MUSCLE FOR 3 MINS. (your flea that became a dragon is now blowing fire and burning everyone). Sorry did you say you are trained to overanalyse everything. I am not meaning to be rude but I don’t want my words twisted to cause panic, when my only intention was to try to answer a FACTUAL question.


Let me state again.
1: On EMG FP are seen if present in resting muscle

2) FP are by themselves not pathological changes

3) It is not necessary in BFS to record a FP, they are not overly concerned to do this, and they know you twitch. They are looking for other signs of anything going on. Other parts of the EMG probably interest them more and aid a BFS diagnosis.

4) The whole reason for starting the 90s rule was so FP in ALS patients were not missed. This is because they are needed to add to the other findings so to fill up a flow chart criteria. Once fulfilled ALS patient gets official diagnosis and access to the support they need.
By talking about the 90s rule I was trying to demonstrate some of the newer things they are researching in terms of FP.

Matt,
I hear what you are saying, and this and other postings I have done have certainly been an eye opener. Perhaps it is right just to tell people who are new that they are fine, no details and no in-depth information. What do the newbies think of this idea? The flip side is that if the info is not got here, they will go to other sites…. and that is BAD. Also what about people like myself that value open discussions about recent findings in EMG, about FP in health and disease, about correlations between BFS and autoimmunity, gut, chemicals etc. Are members like me just to shut up and go away, because if we talk about anything controversial we will have peeople like Rothhaar ( and others)feeling they need to leave. We need support too, we are part of this community for years also, just a different kind than perhaps some of the newbies. I am actually really sad about what has gone on here on this post. I can’t be any more responsible with what I put as I check and recheck stuff (it is how I was trained). When you were talking about your cremaster muscle I began to search for you and as yet have not come up with anything,I am also asking around the medical school, but should I just not have bothered just posted you will be fine it is BFS etc etc… What is the answer to this clash of what people on this board need I am not sure?

TwitchyDoc thanks for clarifying the points I made it was good of you to wade in and reassure the ones I seemed to have upset. Boy the bullets are flying tonight.
H x
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Re: Calling Twitchydoc and Bobajojo - can you reconcile opin

Postby Little Lost on February 18th, 2014, 6:12 pm

Rothhaar,

I can explain the difference in opinions on the waiting time, because you are right that there is contradictions in this particular area.

Up until 2010 there was always the hard fast rule that in ALS fasciculation occured only after weakness developed. It was thought that fasciculations were a side effect of the muscle dying. Therefore always weakness first fasciculation followed. So the two were married together.

However things changed suddenly between 2011-2013, there were increasing reports and a flurry of research papers that challenged this. ( rumblings before this time but nothing concrete). Papers by leading ALS specialists started to back each other up saying "fasciculations often came before weakness. These findings began to find there way onto ALS sites etc. They claimed a period of cortical hyperecitability occured before clinical weakness developed, and this excitability gave rise to fasciculations. This initiating phase was short and concensus said 7 months tops. Later in disease fasciculations were still present but more complex, lastly in very late stages fasciculations went away.

Oh *beep* everyone started to worry what the.....our saftey net...where has it gone. Meanwhile those who had pre 2010 knowledge were wondering why the newbies were getting so uptight, an uprising......contradictions on the timing of fasciculations appeared on the forum as the 2 knowledge bases clashed. Old info vs new info.

However when you look closer you realise that we do still have a saftey net during that 7 month wait ( UMN, clean clinicl etc). I was the one that wrote to Prof Carvalho and Eisen ( Twitchy doc is in contact with them more). Anyway read what they actually said when I asked about where our saftey net now stands. Note they are the people who published the newer research and are classed as the world leading experts on the subject. They lecture all over the world and have over a hundred peer reviewed articles in pubmed combined. These are the people who colaberate with world health organisation, they help define diagnostic criterias etc. You cant get any higher in the world of ALS. Their life work is ALS. We have their words on this forum and dont treat those words lightly. Be reassured. There is nothing to clarify because the neurologists and neuromuscular specialists that you consult were trained by the texts books these 2 wrote.

I hope this explains why on this occasion there is a contradiction in info. just the cross over between old research and new research, what a time to have BFS.

Hexx
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Re: Calling Twitchydoc and Bobajojo - can you reconcile opin

Postby bobajojo on February 18th, 2014, 6:51 pm

Helen,

I appreciate your response and thank you for researching the cremaster for me (haha, a little embarrassing and yes, it is still twitching nonstop along with several other current hotspots). I don't have a problem with your posts whatsoever. I think your post about the email you made to the top docs was a great post.

But here's the thing. We are ALL fine. So why do we continue to search for reasons to believe that we're not?

I don't mean to single Docen out, but my point is that when he tells Mario to "go read recent findings to find that things aren't that simple" it leaves people wondering what the hell he's talking about. What recent findings? This board is full of anxious twitchers. By saying things like that, people have no idea what he's talking about and will never know because "recent findings" is so vague. He just single-handedly and needlessly raised anxiety in many people who are following this post and who will come across it in the future. I don't get it.

-Matt
Over 10 billion twitches since May 2011.
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Re: Calling Twitchydoc and Bobajojo - can you reconcile opin

Postby J4son on February 18th, 2014, 6:54 pm

This discussion is really becoming funny. So a guy starts twitching, goes to see his neurologist whom after examination tells him he is OK. The guy comes here, and learns that what the neurologist said is nonsense, that he has to wait 4, 6, 7, 8, 12 or 13 months (it seems to vary a lot according to everyone’s mood) and do 1, 2 or 3 EMG to make sure he is OK. So the new rule in the medical field seems to be: Do the job of your doc. If your doc says something, you should go and read every medical study and report, then question his diagnosis and tell him what more tests he should perform on you. If your doc decides to perform a medical procedure, let’s say an EMG, you should then jump like a grasshopper to an anxiety forum to learn and then teach him what is the proper way of doing that procedure in your case.

We know something is wrong when doctors start visiting forum to ask non-doctors about their symptoms. When patients are supposed to read by their own the latest medical studies every time they got a diagnosis from their doc.

Am starting to wonder why we really need doctors anymore. All this made me think about a few questions am having:

1) Does this approach apply to everything in medicine or just to neurology? I have a swollen lymph node under my arm pit. Went to my doc he said am OK and it’s not malignant. Should I start blocking time in my calendar to read all the medical literature and try to find something that contradicts his diagnosis? Or this smart approach only applies to twitching? Same with my dermatologist who said that a pimple on my shoulder is nothing to be worried about, should I believe him or consider him the Nobel price of dumbness, and go seek real answers on some anxiety forums?

2) How many twitchers with no weakness end up developing ALS? If it’s 99.99% I’ll be relieved cuz I will not be living in uncertainty anymore and will take it with pragmatism. And if it’s 0.1% am ready to bet that I’m not among them, that I do not need to wait one year or do and EMG every couple of days.

3) What is the time frame after which someone should be considered safe? 8 months, 13 months, 5 years, 10 years, 99 years????? Some people here after more than 1 or 2 years into twitching seems to be as hypochondriac, cyberchondriac, nosophobic and paranoid as at day one!

So let’s go to the worst since expecting the worst is always better than expecting the best and then having bad surprises. So let’s say that our neurologists are all morons and cretins, their diagnosis are crap, anyone twitching without clinical weakness still has 95.3 % chances of developing ALS, unless they wait 10 full leap years with a monthly EMG, and hmmmm am taking a break from that board :).
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Re: Calling Twitchydoc and Bobajojo - can you reconcile opin

Postby RobJ on February 18th, 2014, 8:06 pm

My daughter was told over a period of 3 years, that her ankle pain was in her head, nope there is a bone spur, remove it, next guy said the other guy didn't do the surgery properly need to remove the bone spur again, then another doctor said nothing wrong but we should shoot you up with steroids to help.

Finally went to the best of the best, Dr. Mckali in Children's hospital, took him sometime, but he didn't have useless tests or procedures done on her. Had a chat with her, saw her about 4 times over a period of 6 months then scheduled her for a special type of catscan that looked into the bone.

Found a non-cancerous tumor very rare........1 in 100,000. If you go to his office, he sees all the pro's all over the world, pictures and signatures thanking him from soccer players, golfers, tennis pro's. Told my daughter that in his 40 years, he's seen this twice. Once he read about it, and now once he's seen it.

MND is rear. I'd bet most neurologists in those small little towns have never seen it. Most "big" time neurologists have hardly seen it.

It takes 87 times in repetition to master something. Takes you 87 times to do the same thing over and over to truly master it. You might grasp it, you might understand it, but to truly master it you need to do it 87 times.

There are some good doctors out there but if you are not going to Boston or Cleveland or New York or any other big city to see them, then I wouldn't trust them. They just don't have the experience. It's hilarious listening to these people saying they've had 1,2,3,4 emg's with no weakness. That's just foolish.

The doctors in Boston got A's in medical school the further out you go, the worse the grade.

I've sat in a neurology consultation with a neurologist who was using a laptop typing in the diseases I named off that elevates CPK and causes fascics....she couldn't even pronounce the names properly, nor could she pronounce the fasciculation properly.

Like you can get a bad mechanic, you can get a bad neurologist or as I would call them a Headache Doctor.
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Re: Calling Twitchydoc and Bobajojo - can you reconcile opin

Postby Christina91013 on February 18th, 2014, 10:46 pm

Gary,
My MN/ EMG specialist said the same thing as you did about the testing. He said that by the time fasics. are present there should be abnormalities on the EMG.

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Re: Calling Twitchydoc and Bobajojo - can you reconcile opin

Postby TwitchyDoc on February 19th, 2014, 2:07 am

Omg Matt.. really? The recent findings have been summed up in the Helen's post, do I really need to put references for you? Just please read carefully before accusing me of something. Thank you
Last edited by TwitchyDoc on February 19th, 2014, 3:59 am, edited 1 time in total.
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Re: Calling Twitchydoc and Bobajojo - can you reconcile opin

Postby J4son on February 19th, 2014, 2:18 am

@RobJ: I had a similar experience to your daughter. Terrible and unbearable 24/7 ankle pain for around 2 years. Worst pain in my life. Doctors telling me it’s stress-fracture or tendinitis or ankle laxity. After more than two years (end of last May) it was diagnosed as a relatively rare and benign bone tumor (an osteoid osteoma) and removed through radiofrequency ablation (some doctors remove it through surgery.) Pain disappeared completely a couple of hours after the ablation and never came back.

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.


In the email of Dr. Eisen (October 2013) posted on this board, and unless this email is a fake (this site is gonna make me doubt of everything), Dr. Eisen stated that in his 40 plus years of clinical experience ALS presenting with fasciculation is “extraordinary rare”. He then added that “Please be convinced that ALS seldom begins as fasciculations” and that widespread fascis are a good sign. So nothing really changed, and a rare presentation of a disease will always exist in medical literature, so unless someone discovers that 50% of twitchers with no weakness develop ALS with time, all this mental m4sturbation is of no use.
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Re: Calling Twitchydoc and Bobajojo - can you reconcile opin

Postby veryworried123 on February 19th, 2014, 2:27 am

Wow this thread has taken on a life of its own
But I think it's good

It's just a shame that we spend the majority of our time debating and much less time talking about how to overcome bfs and seek the root cause if there is one

I love and hate this board at same time if that's possible
I love the support I revive from some but I also find it good to just get away from everything

Thanks
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Re: Calling Twitchydoc and Bobajojo - can you reconcile opin

Postby TwitchyDoc on February 19th, 2014, 3:18 am

J4son wrote: 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 would agree, this matches the percentage stated in a few papers including Eisen's famous MND bible. Which means that 1 person in 1 200 000 people may present like this - which is extremely rare and if you read the statistics, it looks worse than it is.

J4son wrote:In the email of Dr. Eisen (October 2013) posted on this board, and unless this email is a fake (this site is gonna make me doubt of everything), Dr. Eisen stated that in his 40 plus years of clinical experience ALS presenting with fasciculation is “extraordinary rare”. He then added that “Please be convinced that ALS seldom begins as fasciculations” and that widespread fascis are a good sign.


Come on, this site might be a bit sensitive to posting some findings that are not positive for us (that is life) but I can guarantee you that this email is real. The only thing I am personally confused about is the thing with widespread fasciculations - in the email to Helen, he mentioned that widespread is good while in the paper he published year ago he had stated that especially those with generalized fasciculations should be followed up for some time. On the other hand, in the same paper he stated that benign fasciculations can be diffuse and affect facial musculature - normal for us but you hardly find another paper saying that, especially from an ALS expert like A.Eisen.

So yeah, I agree that the base has not changed and the recent findings (For Matt - see the Helen's post on the first page, this is a reference and not a vague statement) prompt MND specialists to be more careful and offer some new hints when assessing fasciculations alone. Nothing more, nothing less.
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Re: Calling Twitchydoc and Bobajojo - can you reconcile opin

Postby christo on February 19th, 2014, 4:56 am

Peace ! You are all right !

Bobajo, Mario : yes, this thread is a source of anxiety for new twitchers and that's not what they are looking for when they come here. It's everyone responsability to keep that in mind and to help to new, afrais members. We all know the hell is it when you first discover what is ALS and you believe you could have it.

Helen, Twitchydoc : you are the scientific part of the team, you are reporting facts and sometimes it could be scarry, but as you say, that's life. If these things are not discussed here, they will be elsewhere. Remember that every new member is sent by Dr Google. Personnaly, I think it's better to deal with this kind of stuff here, to see different point of view but everyone must try not to be too much negative.

Robj : yes, with Internet, physicians will have to do their job differently. They are not the only one to "know" and everyone have now access medical stuff. But not everyone can interpret them correctly. We still need to trust our physician, because they are expert, not us. Also they may miss some benign stuff, they are well trained to detect the bad ones.

Finally, I think we must accept that the experts don't have all the answer for example :
- they don't know what is causing the fasciculations in ALS (can't be reinnervation if it happens as a first sign right ?)
- they don't know what is causing the fasciculations in BFS
- they don't know what is the frequency of BFS
- they don't know if widespread fasciculation is more seen in BFS, ALS or if it is meaningless.

They don't know because it's rare, and they don't have enough data. That's also why I still believe the study pushed by TD is important and should be fully supported here. Yes, we have some really good common knowledge of what is a typical BFS presentation and I am sure it works in 99% of cases. But when you are new, you dont want 99%, you want 200%.
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Re: Calling Twitchydoc and Bobajojo - can you reconcile opin

Postby Little Lost on February 19th, 2014, 11:51 am

Hi

J4Son raises a point about fake emails and the need to question everything, He may have meant it tongue in cheek, but it does raise a valid point. I would never quote anything from references I can’t provide. So in light of this I am happy to forward the original emails I received to the site moderator. I also have an English version of the survey Prof Carvalho sent me. He is a very helpful man and I am sure if Gary emailed him directly he would verify the survey sent is indeed from his research group. That will put to rest the idea of fake info which may may have now been planted in anxious minds. On top of this TwitchyDoc has contact with Prof C so knows the addresses and such are real.

It is naïve to think that people won’t research their diseases. They do and medical sites are booming. Generally research papers with frightening titles don’t stay safely tucked in pub Med world anymore, but do find their way onto general Google internet sites and forums. It is often newbies that bring them up, ( the same papers over and over), and many scientific papers, or a botched up wrongly interpreted versions of them, are brought here in a panic by a layperson who has never visited academic publishing sites in their life.

In the past science publications floated in a world of academia. Occasionally significant findings about popular topics made it into general circulation through mass media. One barrier which filtered its reader was always the titles of the papers. Titles were very formal and a non medic would need a dictionary often to just get past the first few words. An example
.
“Feline hypertension and ataxia manifestations of atypical extra cranial expansion of meningioma, a possible human model of disease.”

These types of titles are now disappearing and the above paper would be renamed “The Wobbly Cat”

The wording in science publications also became simpler for easier universal reading and appealing to broader science disciplines. For example inorganic chemists can now read easily about signalling pathways in immune cells etc. It was designed to bring many science disciplines together. For example I can now measure if 2 proteins interact by detecting the energy given out by chemical reaction of such a pairing, i.e. biology and chemistry combined, unheard of until the last decade.

However easy titles, easier reading…..does not mean easier interpretation. Sosome people with minimum or little science/medical background come here clutching info they have no idea what to do with (Kind of like giving a toddler a power washer, give him a water pistol instead for goodness sake and get that jet washer out his hand he will soak everyone kind of situation). This in turn frightens others and the ripple goes on and on. Please dont think I am beinmg patronisisng but we each have our own field, in sociology, or psychology etc I am crap...I am the kid with the jet washer on full blast and everyone is *beep* off and drenched.

The only way I feel to deal with those who ask factual questions based on some science they read, is to try to deal with it in as positive a way as possible, but be truthful ( kind of like Christo was saying in above post). A balance has to be got for Ignoring them or putting fake flowers and fluffy clouds out is not going to enhance the integrity of this site. For example I am useless with psychological issues surrounding health anxiety, a complete novice in this field, I couldn’t advise anyone on this aspect of BFS. I would probably drive the poor people to suicide in my crude stupid attempts….totally useless ….. but through other posters who are educated in this stuff, I can learn about it. SAM, BFSBurger, especially Matt, Yuliasir, and a lot of the old timers posts have saved my sanity many times. I lived the Tobes story unfolding ( can I get extra reward points for this). The depth of knowledge and talent on this board should be exploited not suppressed, and people saying they will leave the board because they dont get the answers they want do not help.

The same goes with the scientific stuff. People coming here need to know they can ask certain questions and get back accurate summaries. What they do with that info is often as you have seen here “ shoot the messenger.” TwitchyDoc gives very accurate interpretations, his science is really good, better than mine trust me, BUT he aint ever going to hand it to you with flowers , that’s how he is. I I bet he gets a lot of PM. However remember he is also a BFS sufferer and needs some support to.

So people read and get very confused with the information. Coupled to this the recent flurry of research in ALS and the upgrading of fasciculations in the AA criteria BOOM, this conversation and others like it was always going to happen over and over. (They say history repeats itself because the fundamental nature of man does not change).

The old timers are right right in that the new facts have not altered the playing field too much, but it has made the grass more muddy, with a lot more potholes for newbies to wade through. I have a couple of PM and I can only just guess what they are going to say.,…all I tried to do was clear up some facts….what can I say they shoot the messenger.
Helen x

Ps

TwitchyDoc. Aware of contradictions within an Eisen article last year. If it is the same one you are talking about it is an editorial comment so not peer reviewed or confusing language would have been picked up on. I know you already know all this but heres my interpretation on the article. So is talking about widespread distribution of complex FP ( with cramp) being a red flag. (I.e.FP of longer duration, possessing a slower firing frequency, Unstable waveform exhibiting increased jitter). Then article goes on to say BFS can exhibit a similar widespread pattern but FP tend to be simpler. Next it highlights problem that unlike the needle EMG, surface EMGs ( which a lot of neurologists use), can’t distinguish morphology so can’t tell how complex the FP is.. So in summary I guess he is saying ( though not clearly), is anyone presenting to them with widespread distribution, especially on surface EMG where it is impossible to look at morphology, should be followed up for 7 months. What is not clear is if people with simple FP on EMG testing ( i.e. most of us), also need a follow up. Would seem not as he says in article quote “Taken together, COMPLEX FPs appear to be an early feature of ALS, clearly distinguishing ALS from mimic disorders, i.e. BFS). .....Note for anyone elseworried at reading this the complex FP are rare and have to be in tandom with other UMN changes etc. as has been said for years on this board FP on their own are not concerning.

Concerning the contradictions between his email to me and his general opinion in this paper ( focal vs widespread). I think it is an issue of timing. The outward spreading model of ALS, show focal then widespread, he probably sees this in fasciculation patterns as well. Oh my fingers were twitching for a few months, it is weak I can’t grip, now the twitching is everywhere. Clinically this is the story he probably hears, because I asked him for his years of ALS clinical experience. As you know often what people feel and what is actually going on physiologically can differ.
Hx
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Re: Calling Twitchydoc and Bobajojo - can you reconcile opin

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