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my dr, dr verma, at jackson in miami said he follows his patients for two years to confirm bfs diagnosis because of that study but he has personally never see one patient jump. It is also his belief that the patients in the study had both. Not one morphing into the next. Just a bit of info.
 
also he was not diagnosed with bfs. Dr said probably, let me see you back - as mine did. He also mentions weakness and 2nd emg not even done yet. Logically it was not and is not yet diagnosed as anything. Although my fears of having it are still very real. Hopefully I'm just crazy. Love to all here. I hope we all find peace.
 
Not that it matters a lot at this point I guess, but I've seen it stated a couple of times in this thread that the original poster mentioned weakness. He said Subjective weakness, not Clinical (or Objective) weakness. Which basically means on his first neuro exam he had what most of us BFSers have...Subjective weakness which basically means that we feel weak or a general weakness but no Clinical weakness was noted by his neuro with his clinical exam.


Take Care, and I hope aside from this debate, that everyone had a Merry Christmas.

Robynn:grin:
 
The bottom line here is this. If you have Widespread random twitching like almost all BFSers have. There is almost no chance that is could be anything else. For those you have constant twitching in one area. i would get it looked at. Only a neuro can tell you what it is. Personally there is no way I could show a neuro my twitching because it is so random. I don't know where it will hit or when. Some times I have a lot, sometime I can go while day and not notice it. Again I will be clear that I have NOT had an EMg, as the neuro said there was absolutly no reason to do one. my reflexes are good, my strength is good, and I don't have atrophy. I have called him 2 times since, and both times they said there is no need for more testing, but we can if you want to come in. I have declined both times.

Who wants to sit around for 5 years waiting? I don't! Some one can correct me if i am wrong, but I was told recently by some one who went to and ALS specialist in Indianapolis (this person specializes if bfs too because he has it also), that the more widespread the more likely to be benign. and that he has never seen anyone develop ALS whose onset was widespread random twitching. You can check out the post on aboutbfs.com. Under experience with bfs, the poster was msm.
 
Great post, MHS! There's just one thing wrong with it: there are many that are more than willing to sit around for 5 years and more to hear they were right all along and have MND.

For some folk, they just cannot be wrong once they get it in their heads they are right.

Nice try!
 
mhs: I have the same pattern of twitching as you - random spots everywhere, no constant ones - few twitches in thigh, then few in arm, one in back etc.
I believe that this study was just aimed to prove and document other cases where fasciculations with cramps just did precede MND and that neurologists should not apply label "benign" before 4-5 years..also to cover their a**. If you look at the cases, only 2 had truly widespread twitching (one had only in upper arms, second in legs and back)...so it was 2 ouf of 210...which is very low (but again, its clear that it was not separate neurological condition).
I think there is no benefit in discussing this further - it just can happen /like it happened to some members here/, this brand new case study just confirms the older ones but it does not change anything, BFS is mostly that, BFS.
 
Totally disagree with you Blizna. They ABSOLUTELY should tell people it is benign. With poor research that it is anything but, imagine the crazies waiting 5 years before told benign. Perish the thought. They would sit at home cringeing in anticipation. Like Zaphoon says, some people just cant get on with there lives, they prefer to sit around and obsess with might happen in the future. People need to toughen up. If a few twitches freak people out....... oh how soft and introspective people have become.
For some people twitchy muscles is just normal. As I have said before, some athletes have them all the time!
The Drs do not tell BFSers that its benign to cover their A....s as you suggest. Its the truth and it would be terribly cruel to tell their patients anything else.
Mayo has done retrospective studies with absolutely no evidence of bfs changeing into ALS. Remember your doctors have a heap more knowledge and are constantly having to update themselves with the latest research. They understand the studies at a level that the average people do not eg. The power behind the study, the person doing the study, the centre doing the study and all the other studies that are often done that disprove theories. Leave it to the experts.

I know of 2 neurologists that have benign fasciculations.... yes of course they paniced for a day or 2, thats normal for anyone. They even got a collegue to do an EMG. When it was normal, they returned to work and forgot about it. Thats what all you twitchy people should do.

Here is your programme prescribed by Dr Aly
1. Worry for a few days....thats normal
2. If your worry is out of control then by all means insist on an EMG, especially if it will alay your anxiety.
3. If the emg is normal then just get on with life as before.
4, If you cannot control the anxiety, get an appointment with a good psychologist that can help you see things in a better light.
4. If you develope an actual disabling problem associated with clinical weakness eg footdrop, cant hold something, cant get up stairs, then make another appointment to have a follow up.
Its easy.
 
Aly, I agree with almost everything you just stated, its true people should not sit around for the next 4 or 5 years waiting for the ground to drop from under them, but at the same time and I think I may have posted this one other time. Part of the reason why so many debate this so strongly and get stuck is because alot of times, BFS comes with alot more symptoms than just twitches and anxiety. It can, I believe in about 40% of the cases, it can affect the sensory nerves along with the motor nerves, and when this happens, you are not only dealing with the twitches, but also dealing with some pretty intense sensory symptoms, such as tingling, numbness, burning, pain, itching, ect. along with extreme muscle fatigue, and stiffness.

I know alot on here have used these sensory symptoms to assure some of the scared newbies that ALS should be forgotten about because ALS doesnt have sensory issues, but you stated on an earlier post that it can, so info like like tends to get stuck and they forget that even if ALS does have sensory issues, they would still have clinical weakness somewhere along with it.

Its hard to just drop it and get on with things when you have a couple of handfuls of symptoms with no explanation for them, some neuros say BFS some say its all in our heads. I feel sorry for the ones who are told its all in there heads. Sure BFS isnt deadly or disabling but it can for some be debilitating and a very confusing syndrome to have because the symptoms can vary so and mimic other neurological illnesses.

Not trying to sound argumentative at all, you know I love you to death, just throwing in why I feel like so many get stuck here debating stuff like this. But very agreed that they need to force themselves as I did to get unstuck.

Take Care

Robynn:D
 
Dear Robyn. Luv ya too.

My comments were really referring to Bliznas comments about not labelling BFS as benign until 5 years,and that the neurologists are incompetent, well initially. I have been doing a bit of reading about BFS this morning. Its not really acknowledged here, probably because we have only 4m people. I suppose I work with a progessively debilitating disease (and I live with one ), this makes me look at things through a different pair of glasses. When I read on this forum about a grown man crying because of a symptom that has already been checked as benign, I just think of my patients with MS, PALS and it makes me frustrated.
BFS seems to exist, and undoubtably causes a heap of neurological symptoms. Many people on this forum, unlike you, do not have that whole gambit of symptoms. Many just have one. The twitching. The debate about benign fasciculations rages continually, yet the answers are everywhere, here on the forum, Dr google, Neurologists...alll saying that its not ALS.

I see research is being done into BFS and I am sure there is a lot to learn about the syndrome. Treatment seems to be emerging with some benefit, so thats good.

I do believe however, that most of the twitchers have BF (just benign fasciculations) They are well documented as extremely common, lasting sometimes weeks to many years, accompanied by nothing else. BFS in contrast, is a set of different symptoms hence the term Syndrome.

Regardless, it will be hard to live with if you have sensory issues, fatigue etc, but it will not be terminal, so like all other illnesses and syndromes, you just have to adjust and move on. You know I am telling you this from experience. They are not just random words.
I have fasciculations all the time (except when the neurologist wants to look)!

A disjointed post I know, but I am avoiding roving eyes, so just do it in bits and pieces sorry.
 
Hi Alyoop, thanks for the note about CoQ10 and Vitamin D... I started at a higher dose, but now am taking 2000 mg/daily of the "D" and about 100mg of the CoQ10 2x daily. Not sure if that's helping or not, but most of the constant twitching I had initially is gone, though I think I had too much caffeine today at my Mom's holiday party as my legs are going a bit nuts right now!

Ironically, a friend who's staying with my family (he was yet again homeless and we've helped him before) has been given an initial diagnosis of either stomach or kidney cancer. Devastating news... but I'm telling him to stay positive, and that YOU'RE THE SAME PERSON TODAY AS YOU WERE YESTERDAY, and you'll be the same person tomorrow. So though it really sucks, put it in perspective and deal with it, and live your life! Because I'm not going to waste the rest of my life, however long it will be, worrying about what is going to happen or not. Not only do you deserve better, so does your family.

I want to thank all of you on this board, as you've really helped me through the last 8 months of worry... Merry Christmas to us all!

Helen
 
I believe that this study was just aimed to prove and document other cases where fasciculations with cramps just did precede MND and that neurologists should not apply label "benign" before 4-5 years..also to cover their a**.

This paper was intended to challenge the standards for calling a combined cramp and fasciculation disorder benign, especially since the combination of cramps and fasciculations has traditionally led neuros to use more aggressive diagnostic and followup processes with these types of patients because it is so closely tied to ALS. Apparently, some neurologists felt that a clean EMG at the time of CFS diagnosis was an adequate diagnostic and no followup was necessarily required unless the patient developed further symptoms. The four patients in the article were diagnosed with CFS and subsequently developed ALS within 18 months of the CFS diagnosis -- something that might not have been caught as quickly had the patients not been receiving more aggressive followup.

For lack of a better term, folks, this is "inside baseball". The authors of this study are presenting the conservative side of the issue -- although, the overwhelming majority of CFS patients don't develop ALS, we have these four cases that did (and three others that appear to have been documented in the past 25 years) -- maybe we should followup more aggressively and over a longer timeframe. And maybe we should wait a while before we call it "benign".

That's all this paper says. I doubt that any ALS specialist neurologist is surprised by these findings. This paper seems to me to be aimed at the general neurologists out there, prodding them to do longer and more detailed followup with their CFS patients.

If you look at the cases, only 2 had truly widespread twitching (one had only in upper arms, second in legs and back)...so it was 2 ouf of 210...which is very low (but again, its clear that it was not separate neurological condition).

The authors do not make that claim in the paper, Blizna. You are the only one making that claim. It's false, it's fearmongering, and if you are really interested in the truth, you should retract the claim. The combination of cramps and fasciculations has always been an indicator that ALS was a possibility. All this study shows is that a single EMG done on a CFS patient may not be sufficient to label the patient as benign CFS.

I think there is no benefit in discussing this further - it just can happen /like it happened to some members here/,

Name them and provide the documentation that shows the BFS diagnosis changed to ALS (including the clean EMG and the lack of upper motor neuron symptoms at time of BFS diagnosis), Blizna, or withdraw the claim. Stop the fearmongering.

this brand new case study just confirms the older ones but it does not change anything, BFS is mostly that, BFS.

Seven documented cases of CFS, not BFS, that also developed ALS over the past 25 years, out of a potential population of millions. You're right, Blizna, this study doesn't change anything. All your fearmongering here is in vain, but you still couldn't resist the opportunity, could you?
 
So is the concept of this is that BFS may lead to ALS? Or possibly cause it?

There's no factor of complete coincidence among those two who unfortunately got ALS?

Also, what's the difference between BFS and just normal twitching?
 
The authors do not make that claim in the paper, Blizna. You are the only one making that claim. It's false, it's fearmongering, and if you are really interested in the truth, you should retract the claim. The combination of cramps and fasciculations has always been an indicator that ALS was a possibility. All this study shows is that a single EMG done on a CFS patient may not be sufficient to label the patient as benign CFS.
I have personally emailed the authors, and it is as I said - 2 out of 210 patients they followed. It is not fearmongering, I really do not get why you still insist on something that you do not fully understand. Read the summary of the study, ask the authors if you do not believe me. They definitely stated there is no way it was separate condition because: 4/210 when ALS incidence is 1/100 000 is impossible and mainly, weakness and wasting appeared in the limbs affected by fasciculations.

Name them and provide the documentation that shows the BFS diagnosis changed to ALS (including the clean EMG and the lack of upper motor neuron symptoms at time of BFS diagnosis), Blizna, or withdraw the claim. Stop the fearmongering.
Artisto - 5 years of fasciculations, clean EMG. Diagnosed with ALS recently. Manwiththeplan - bicep twitching for years. Lories brother Tim - 7 years...only the ones I can think of now.


Seven documented cases of CFS, not BFS, that also developed ALS over the past 25 years, out of a potential population of millions. You're right, Blizna, this study doesn't change anything. All your fearmongering here is in vain, but you still couldn't resist the opportunity, could you?

This is absolutely not fearmongering, its just stating facts. And again, it is not CFS, read the study please. Their condition was initally diagnosed as benign with or withour cramps.
 
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I can't believe I am being sucked into this.

Artisto. He had a dirty EMG. Read his posts. He also have bulging discs throughout his back. Of course this may have caused his symptoms initially, and he was then unlucky enough to get als.

Manwiththeplan. I can't find this user.

Lories' brother Tim. There is not enough info here. Did he go to a Neuro in those early stages? Were his twitches widespread, or local. Were the cramps in the same area?

I agree with jiujitsu's neuro that they are 2 seperate conditions. I believe als patients can have benign twitching too. The main cause......anxiety and stress. The mayo clinic study didn't find anyone, this new one found 4 people. There are 7 documented cases out there over the lat 25 years. Cleary VERY RARE! For the twtiches out there readint this. Please go to aboutbfs.com, and read msm post her visit with a Nerve Hyperexciteability specialist.
 
mhs: Artistos first EMG was clean afaik. Manwiththeplan1 I guess..Jenny (comfortable with ASL) - 7 EMGs before dirty one etc.

I do not want to argue - the study speaks for itself, the authors confirmed me that the symptoms of ALS appeared in the places affected for fasciculations years before (e.g. case 4).
If you think its separate condition, please again look at the numbers: 1 ouf of 100 000 gets ALS in the population. Here, 4 of 210 patients got it and it presented in the affected areas.

Please, if you do not believe me, ask the authors, they are very kind and responded to me few times.

Alyoop: You disagree with me? I did not write that study! It was NOT my suggestion to do not say its benign before 4-5 years elapsted, that is stated in the study as well. I am not happy with that, I personally have fasciculations just for 3 years.
 
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