Diagnosed with BENIGN MND

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Re: Diagnosed with BENIGN MND

Postby RobJ on July 8th, 2014, 5:08 pm

It doesn't matter..........all that matters is weakness.

If you don't have weakness you don't have MND. You can have a dirty EMG for years, but if aren't weak, you don't have it.

You realize that everyday you die a little right?

Good neuro's will tell you, you are clean after 8 months to 1 year - NO WEAKNESS
Better neuro's will tell you, you are clean after 2 years - NO WEAKNESS
The best neuro's wait about 4 years, tell you you have about the same chance as someone on the street of getting MND, but will keep an eye on you.....still interested in how you turn out....

Kennedy's disease is one such MND.....when people are finally diagnosed, they recall things once asked....goes way back, been documented back to childhood when they are finally diagnosed in their 50's....some cases of MND take a long time....others are quick....but not all others are quick, some take long to develop into weakness.

NO WEAKNESS - NO PROBLEM.....LIVE YOUR LIFE!
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Re: Diagnosed with BENIGN MND

Postby veryworried123 on July 8th, 2014, 5:27 pm

I don't really get your analogy about good better and best
so what are we staying now you have to wait 234 years to be absolutely certain depending on how good your Nero is


The four-year comment you make it is absolutely contradictory to what is the document prior

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Re: Diagnosed with BENIGN MND

Postby veryworried123 on July 8th, 2014, 5:31 pm

You also have to realize is that this isn't just a situation of people and weakness

I think everyone understands that

What many individuals including myself is the possibility that these fasciculations could be the start of one day it being a MND or something very nasty

That's where the beer company for people that they can't seem to come to grips with the fact that it will not lead to something else one day

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Re: Diagnosed with BENIGN MND

Postby RobJ on July 8th, 2014, 6:16 pm

It's all about weakness. If you don't have weakness you don't have MND.

The good neuro's see it 6 or 7 times in their career and will tell you after 12 months of twitching that you don't have it.....
The better neuor's see it 30 or 40 times in their career and will tell you that after 2 years of twitching that you don't have it....
The best neuor's (major cities, like Boston) see it 10 or 20 times in a year (in person, consult, assist others) and will tell you that after 4 years you don't have it but have the same probability as anyone else getting it.....but documented cases of twitching to weakness far exceed 4 years........

Get off the idea you have it. You don't. If you don't have weakness you don't have it. Simple as that. It doesn't matter if you twitch, have cramps, have perceived weakness, think you are weak, pain, numb, buzzing, tingling, etc....or EMG is dirty....it just doesn't matter.

If you can't turn your ignition in your car, can't pour a gallon of milk, can't hold that cup of coffee and you twitch or cramp, then be concerned.

YOU NEED TO BE WEAK to be diagnosed. I was told by the best of the best, even if they found a gene that said "yup you have it", if you don't have weakness you won't be diagnosed, because they just don't know enough. They have to be 100%, 100% is weakness, even if you don't twitch.

Got it?
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Re: Diagnosed with BENIGN MND

Postby veryworried123 on July 8th, 2014, 8:45 pm

Yes I understand what you saying in general as it's a dieases of weakness but I still find some of your comments confusing

In general what we have historically said is after 8 to 12 months of twitching with no weakness you have the same probability of developing MND as the general population so why does it take after 4 years by the best Nero?

What's the difference between a person who twitches for a year without weakness and a person who twitches for four years without a weakness? The probabilities are the same correct?

If you have been cleared by a nero and after one year if you don't have weakness you don't have it and it will not develop into anything else correct?

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Re: Diagnosed with BENIGN MND

Postby garym on July 8th, 2014, 10:26 pm

RobJ wrote:The good neuro's see it 6 or 7 times in their career and will tell you after 12 months of twitching that you don't have it.....
The better neuor's see it 30 or 40 times in their career and will tell you that after 2 years of twitching that you don't have it....
The best neuor's (major cities, like Boston) see it 10 or 20 times in a year (in person, consult, assist others) and will tell you that after 4 years you don't have it but have the same probability as anyone else getting it.....but documented cases of twitching to weakness far exceed 4 years........



I totally disagree with this statement....I've seen some true experts, working at Baylor University ALS clinic with Dr. Stanley Appel here in Houston. They told me not to worry after one year...this is a clinic that sees dozens of cases of als every year, along with many other neuromuscular diseases. Not once did they ever tell me I needed to wait any where close to 4 years.

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Re: Diagnosed with BENIGN MND

Postby Yuliasir on July 8th, 2014, 11:43 pm

Dear all,
we may discuss the subject for years...
as well as scientists which by the way constantly refine their findings, smotemies forgetting about good math however etc.
but.

the key issue is, on my point of view, not chances, years, terms, EMGs, prodormal signs etc.
but our attitude.
how would we live those 8 months, 1year or 4 years.

live your life or wait that weakness would come?
that is the question.
each of us has its own answer I think.
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Re: Diagnosed with BENIGN MND

Postby TwitchyDoc on July 9th, 2014, 1:04 am

Garym: You were lucky that in your case they acknowledged the BFS.

I was curious so I asked prof. Pamela Shaw, the ALS spec who diagnosed our Ian - she said she had never seen a case with generalized fasciculations, only patients with their calves affected or patients with neuromyotonia.

So it really depends, even specialists might lack the experience due to rarity of this condition and hence their recommendations and follow-up plan might differ.
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Re: Diagnosed with BENIGN MND

Postby veryworried123 on July 9th, 2014, 1:18 am

Can you expand on your comments regarding the calves

So there are the hard rules such as 1 year of no weakness and clean emg despite cramps and twitches and your consider to have the same probability to get MND or something nasty as non twitchers etc?

Anyone?
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Re: Diagnosed with BENIGN MND

Postby TwitchyDoc on July 9th, 2014, 1:26 am

Look, there is even the sticky post of dr. Eisens and prof. Carvalho's responses - it is unlikely you could find a better specialist in this area. And they confirmed that usually 8 months is enough and that often if there are fasciculations preceding weakness in ALS, there are upper motor neuron signs - and that is exactly Ian's case. So obviously they are right and you can trust their opinion.
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Re: Diagnosed with BENIGN MND

Postby veryworried123 on July 9th, 2014, 1:34 am

Thank you
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Re: Diagnosed with BENIGN MND

Postby nrwtwitcher on July 9th, 2014, 1:56 am

but this in this case, there where bad signs at the first emg!, chronically denervation, in a lot of muscles (Raindog wrote this)...and other clinical signs. A positive Babinski for example. I think and I also hope that this is the main difference to bfs or bfcs. I have visited 3 musculare specialists in germany. They all have not seen a case with only twitching and cramping without other clinical signs and a clean emg, who developed MND after a couple of months. I asked them after 7 months and they told me, that there was no case...
German2 was told by one of the most famous als specialists in germany (leader of als ambulance) that after 8 months twitching, extreme rarely after 12 months, and no other clinical signs, it is not als!
And this doctor is really a als specialist, maybe the most famous specialist for als patients in germany. For example, a positive babinski reflex is a clinical sign... in that case.
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Re: Diagnosed with BENIGN MND

Postby nrwtwitcher on July 9th, 2014, 2:05 am

I have asked one of the neuromusculare specialists, what is about cases where patients develop als after 4 or 5 years twitching and cramping. He said, that he think, that those patients are part of the 70-80% of thenormal healthy population who twitch in a normal range... He said that these studies are normaly retrospective studies, the patients remember twitches and cramps. But at that time, for example four years ago, they have not visited a neuro and they normaly have not one emg. One of my neuros told me that signs of mnd are usually seen at the emg years before...not days and usually not months.
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Re: Diagnosed with BENIGN MND

Postby nrwtwitcher on July 9th, 2014, 2:07 am

any opinions from anyone? Is that correct, what the neuro have told me? Thank you.
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Re: Diagnosed with BENIGN MND

Postby TwitchyDoc on July 9th, 2014, 2:08 am

nwtwitcher: no opinions are needed, it matches what we have said and what the experts answered to our questions. I totally agree.

As for the 70-80% of population twitching - I do not think so. As I mentioned. prof. Shaw, the ALS spec who diagnosed Ian, said she had never seen a patient with BFS elsewhere than in their calves. So I still believe that BFS is very rare (remember that the BFS study the ALS specialists were running had not been finished because of lack of patients).
Last edited by TwitchyDoc on July 9th, 2014, 2:14 am, edited 1 time in total.
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Re: Diagnosed with BENIGN MND

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