Calling Twitchydoc and Bobajojo - can you reconcile opinion?

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Re: Calling Twitchydoc and Bobajojo - can you reconcile opin

Postby Yuliasir on February 21st, 2014, 6:53 am

at patients he may have encountered

as he is a neuropathologist, suppose he has not much chance ot see patients personally but works with their tissues only (biopsies or autopsies, as the case may be)
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Re: Calling Twitchydoc and Bobajojo - can you reconcile opin

Postby TwitchyDoc on February 22nd, 2014, 3:53 am

Yuliasir, LittleLost, Edado69, christo: Thank you, I appreciate you understand that this problem needs to be investigated and that it is not my fault if the inputs are not what we would like (I like the "shoot the messenger" analogy Helen used ;)

dARR: Again a very intelligent reaction...thanks, your contribution to this forum is invaluable...
Last edited by TwitchyDoc on February 22nd, 2014, 5:32 am, edited 2 times in total.
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Re: Calling Twitchydoc and Bobajojo - can you reconcile opin

Postby DaveCH on February 22nd, 2014, 5:09 am

Having read all this one thing I would say is I like the fact twitch doc tells you how it is it's good that you know you will get an honest opinion which is what I am after when I'm concerned
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Re: Calling Twitchydoc and Bobajojo - can you reconcile opin

Postby Yuliasir on February 22nd, 2014, 5:44 am

it is not my fault if the inputs are not what we would like


I wonder many times WHY you consider the inputs you give as those which are 'not that we would like'. Nothing in the newest researches as far as I understood did not make typical BFS person (which clinical picture includes rather young or early middle age, new or previous health anxiety story, twitching onset traceable back to recent severe stress or infection, possible dietary input, initially focal twithcing then quickly widespread not within same muscular group but bodywide, no suspicious sings on EMG/MRI, normal clinical, normal biochemical tests except vit D/bilirubine or other minor issues, often hypermobility, often sublinical thyroid issues) a candidate for soon or even delayed ALS onset. Neither they suspect that BFS is a pre-requisite for further ALS development (which by the way is confirmed by the fact we have people with 10, 20 and 40+ years of BFS (the last means that the person probably is in her 60s or so), neither for premature ALS (before common maximum occurence age group).

Yes I support medical investigations you started (and I sent my data as one of the forst participants) but at the same time for me looks like BFS and ALS have quite specific clinical pictures which seldom might be confused by experienced doctors. Our main problem is distorted perception - we usually see only one piece of the puzzle, like twitches, or swallowing problems, or name other, and most of us have no idea that disoders itself has a FORM, a constellation of signs, and that our constellation is DIFFERENT.
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Re: Calling Twitchydoc and Bobajojo - can you reconcile opin

Postby TwitchyDoc on February 22nd, 2014, 5:55 am

Yualiasir: I said "IF the findings".. and why I think so? Because obviously some people do not like them/do not understand and attack me..so I assume were they good, it would not happen.
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Re: Calling Twitchydoc and Bobajojo - can you reconcile opin

Postby Yuliasir on February 22nd, 2014, 6:50 am

well, JUST IN CASE
our fellow TwitchyDoc privately noted to me that I am not exactly right and that people with generalised fasculation are considered as a risk group and should be followed up.
which is still Ok for me becasue I WAS FOLLOWED UP FOR 9 months. Had to confess that 1 year was planned but I skipped last visit due to the fact there was no changes in my condition.

it is 2,5 years in now for me.
I twitch (less than before but still in my thumb, eyelid, legs, deltoids and, well, secret places sometimes). I have cramps sessions, sometimes severe, mostly in legs, but sometimes in arms, rib muscles, deep abdominal muscles (or even it may be uterus becasue the pain is well resembling uteral contractions). But I am clinically able and still fit and operational. I also have tunnel like issues - pain in elbow and wrist, numb fingers (much decreased since I started to do simplest workouts, 8 minute mini gyms)
Same are tons of people registered here and practicing 'lifetime followup' coming and saying that they are OK in 2, 3, 5, 10, 40+ years. Some come and say they are worse after a long period of more or less fine being. But still usuaully they come later with the same results of clincial/other exams - BFS.

Dear fellows,
I strongly encourage all of us do not attack on TwitchyDoc, please. He really has no idea to freak anybody out. It is our fear and anxiety which makes us blind to a simple but precious finding we have here in our community.
It is that the reality is still in favor of vast majority of BFSers. Yes we are in risk group (most of us are in the risk groups for cancer and cardiovascular diseases too, and this is probably what would kill the vast majority of us once). But we form those probably 90+% part wich are happily escape anything drastic (except spoiled lifetime of course).

everybody have a good day
with best regards
Yulia
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Re: Calling Twitchydoc and Bobajojo - can you reconcile opin

Postby TwitchyDoc on February 22nd, 2014, 7:50 am

Thanks Yulia. I had to add what I mentioned is quoted without any changes or interpretation from my side. Just pure findings from recent studies. So please do not even bother accussing me from misinterpretation.

The basic fact is unchanged - without any neurological deficits and clean EMG, usually several months exludes the MND diagnosis.
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Re: Calling Twitchydoc and Bobajojo - can you reconcile opin

Postby garym on February 22nd, 2014, 8:15 am

TwitchyDoc wrote:Yualiasir: I said "IF the findings".. and why I think so? Because obviously some people do not like them/do not understand and attack me..so I assume were they good, it would not happen.


for me it is simple, you are not secure in your dx (like many others here) so you continue to search for any possibility that what you fear might come true. Now I'm a truth teller, and I'm never one to censor any information placed on this forum that is not clearly offensive or rude to other members, and I actually think that the information and the perspective you bring to this forum can be valuable, but the problem as I see it is that you focus in on minute details of information without telling the whole story and that scares some people. So, please tell me the facts, and only the facts of this new research....sorry, i'm too lazy and uninterested to search for them but for the sake of the other board members lets get the facts out in the open....and while you're at it, please answer these few questions if you can:

1. What percentage of people who go on to develop als present with fasciculations ONLY on emg without any other suspicious signs/changes on the emg?

2. What percentage of people who go on to develop als present with fasciculations ONLY on emg without any other suspicious signs/changes on the emg and have no CLINICAL WEAKNESS?

3. What percentage of people who go on to develop als present with fasciculations ONLY on emg without any other suspicious signs/changes on the emg and have no CLINICAL WEAKNESS and were initially dx'd with a benign condition such as BFS by a qualified neurologist?

4. Of those people that meet all the above criteria that went on the develop als, how long did it take for the doctors to suspect something other than a benign condition might be at hand? Not until als was dx'd, but just until the docs became concerned/started seeing suspicious signs/sxs that we as bfs sufferers do not experience.

If you can, please answer each question specifically. I will be sincerely interested in reading your responses. I suspect, but again will wait on the facts, that the number will be very, very, very small....so small, i would guess, that it might even be within the margin of error, statistically, of any clinical trial/research program, but again i will wait for the answer as I truly do not know. If the percentage of people with als that presented with the above scenarios i detailed in question form is less than, say 3-5% I will not be impressed.

Anomalies happen all throughout nature and nothing is certain, well except death. Every great once in a while, there turns up a 3 headed frog. While some people jump to the conclusion that all frogs in the world will soon have 3 heads, most people understand that it is just a freak occurrence of nature, a random possibility....now I've been reading stories for years about 1 guy here and one person over there that had fasciculations first then developed als, but there was always some caveat such as the guy was in his 70's and didn't receive an emg until like his 3rd visit to a neuro so all kinds of things could have been missed. I've always known for a fact that having BFS will not exclude me from ever getting als. That I'm certain is a fact. Now, I 100% believe, after all the searching i have done through the years, that having bfs doesn't increase my chances of getting als by even 1%. That I cannot claim to be a fact, but there is evidence to suggest it is factual.....I guess time will tell.

One last thing, this is in no way an attack on TD or any information he brings to the board, but rather a sincere request for answers/information.

Take care,
Gary
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Re: Calling Twitchydoc and Bobajojo - can you reconcile opin

Postby wjjw on February 22nd, 2014, 8:23 am

Great summary Garry. I would also suggest one more:

5. Of that very small percentage of cases, are they absolutely certain that any twitching initially observed was in fact directly related to MND, and not a co-existing condition?

Cheers,
Bill
A knowledge of the existence of something we cannot penetrate, of the manifestations of the profoundest reason and the most radiant beauty, which are only accessible to our reason in their most elementary forms--Albert Einstein
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Re: Calling Twitchydoc and Bobajojo - can you reconcile opin

Postby garym on February 22nd, 2014, 8:26 am

TwitchyDoc wrote:
The basic fact is unchanged - without any neurological deficits and clean EMG, usually several months exludes the MND diagnosis.



great, while i was typing you already answered one part of my question... :)
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Re: Calling Twitchydoc and Bobajojo - can you reconcile opin

Postby garym on February 22nd, 2014, 8:29 am

wjjw wrote:5. Of that very small percentage of cases, are they absolutely certain that any twitching initially observed was in fact directly related to MND, and not a co-existing condition?


great question!
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Re: Calling Twitchydoc and Bobajojo - can you reconcile opin

Postby TwitchyDoc on February 22nd, 2014, 8:45 am

garym: I cannot answer these questions because the best ALS experts cannot :) But given the rarity (see Al Awaji, MND: Synthesis of research or simple fact that very few cases were described) of frequent and widespread fasciculations, it is statistically impossible that a person with widespread fasciculation would independently develop ALS.
As you ask for numbers:

In his MND bible, Eisen mentioned that out of 212 patients, 30 had fasciculations as an isolated, initial symptom of the disease. Several of them had normal EMGs. By the way, it was A.Eisen who disputed the Mayo study and added that 6,7% of his patients presented this way.
Mayo study authors replied and explicitly stated that it matched their experience and a clean EMG is needed.

The BFS study I helped to organize with ALS experts was aimed to answer or at least specifically deal with these questions. The only way we can get close to real answers is to participate, even though we are just secondary data. But during a year they gathered only a few patients (London, Lisboa, Vancouver AFAIK).

Really I wish I could answer these questions and so are other researchers but obviously this topic is drawing more attention (based on the fact how many articles dealing with FP and excitability has been published).

But this is unknown land and we know that sometime BFS progresses to something worse than BFS but benign (they called it non progressive anterior horn cell disease).

I repeat, if you are really interested, join the study and help them publish serious paper. Not because of me but for the sake of all neurologists and future twitchers.
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Re: Calling Twitchydoc and Bobajojo - can you reconcile opin

Postby christo on February 22nd, 2014, 9:14 am

In his MND bible, Eisen mentioned that out of 212 patients, 30 had fasciculations as an isolated, initial symptom of the disease. Several of them had normal EMGs. By the way, it was A.Eisen who disputed the Mayo study and added that 6,7% of his patients presented this way.
Mayo study authors replied and explicitly stated that it matched their experience and a clean EMG is needed.


TD, do you know of many of those who had clean EMG also had a clean clinical exam ?
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Re: Calling Twitchydoc and Bobajojo - can you reconcile opin

Postby TwitchyDoc on February 22nd, 2014, 9:23 am

christo: it was not stated explicitly but as only several of them had clean EMG, I assume the rest had some signs. They said the mean time between fasciculations and weakness was around 6 months (3-11 if I reemember correctly).
I really cannot tell you more, I do not know and obviously nobody knows. The bottomline is - clean EMG is still a golden ticket and this has not changed.
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Re: Calling Twitchydoc and Bobajojo - can you reconcile opin

Postby wjjw on February 22nd, 2014, 9:37 am

TwitchyDoc wrote:Synthesis of research or simple fact that very few cases were described) of frequent and widespread fasciculations, it is statistically impossible that a person with widespread fasciculation would independently develop ALS.

You mean statistically improbable. But of course we have no idea how many people have frequent and widespread fasciculations yet never report them if its their only symptom.

Cheers,
Bill
A knowledge of the existence of something we cannot penetrate, of the manifestations of the profoundest reason and the most radiant beauty, which are only accessible to our reason in their most elementary forms--Albert Einstein
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Re: Calling Twitchydoc and Bobajojo - can you reconcile opin

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