I need some help with this?

[bart1]

Sorry to bother you all with this but after reading some posts on this forum my anxiety has gone trough the roof.
It’s about the twitching stuff. I posted this before but people say twitching alone doesn’t mean anything. I also understand if fasciculations are due to ALS an emg would pick up abnormalities. However I read some cases here that said the opposite.

Lori’s story: 2 years of widespread twitching and cramping and now possible MND
Jennifer (scared of ALS) : 5 clean EMG’s, widespread twitching, visited an als clicic where they said she didn’t have ALS and 6 months later she has been diagnosed with ALS.

So, are those really exceptional cases? Or is this common that this can happen? That you can twitch so long without weakness or changes in EMG’s?

I’m twitching widespread for 22 months now, no real weakness that I’m aware of, however I have stabbing pains in arms and kind of ‘knife’ cramps on and off.

Could someone help me with this?

Thank you

 

[GlenBrittle]

Hey Bart1,

OK , breathe in , hold it breathe out. repeat.

Have been to see a neurologist that specializes in MND yet ? These are the people you need to goto.

Yes , you have read about the twitches. They are a by-product of something else happening. There are so many reasons , why bother to guess.

Now , those sharp pains and quick cramps should be checked out. Again there are so many reasons to have them , its for a doctor to figure out.

OK , breathe in , hold it breathe out. repeat. Whatever is going on , you need to relax. Anxiety is a vicious circle it just keeps feeding itself.

You have not been diagnosed with ALS. You can not compare to anyone else to make that diagnosis as everyone is different.

Relax , and find a good neuro.

Glen

 

[Blizna]

Glen: I know Bart1 from other forums, he did visit the ALS specialist, professor in MND who told him that he never in his life saw a case where twitching preceded weakness and reassured him that twitching and clean EMG is absolutely no ALS. I was told the same thing by specialists too.
I know that this can happen with familial ALS - I would say it is (if she really gets ALS diagnosed) Lories case, since her brother has ALS. I guess we all twitcher are just scared because many people post only part of the story and didnt mention (maybe they really did not notice) other symptoms.

 

[bart1]

hi Guys,

Glen, like Blizna said I went to a ALS specialist but so did Jennifer, didn't she? My neuro did say he never saw a patient with only twitching as first symptom. But when I browse the forum here I can easily find 5 who did. This makes me really doubting my neuro, although he's a professor in MND.

I'm so embarressed that I have to bother you with this because you have had the diagnosed. You're such a strong personality, so willing to help others.

The twitching is very bad lately and that feeds my anxiety that something is really wrong. It used to be 24/7 in my calves but now the frequency in other body parts, like neck, arms, back, chest have increased dramatically. The on and off sharp paines have to do something with it all. I also have vibrating and buzzing stuff going on. But is it 'normal' to twitch almost 2 years (22 months) without weakness and still it is ALS?

Thank you,
Bart

 

[AndyDJX]

Hey Bart--

I posted something similar to what I'm about to say in a thread last week, but it's worth repeating here.

Some people who twitch get ALS, most people who twitch don't. Your only symptoms are twitching and some pains; everything you describe is consistent with BFS. Is it POSSIBLE that you will get ALS? I guess anything's possible and you can find a few rare cases to prove that. Is it LIKELY you will? Absolutely not. Try to focus on the scenario that is not only more positive, but also far, far, far more likely.

Basically man, you twitch and you have pains. I recently entered "twitching, fasiculations" into one of those symptom finder websites and it listed 78 different things that could cause twitching. Now, if you had twitching + atrophy + obvious weakness, I would understand your concnern. But in the absence of the obvious symptoms that doctors look for with ALS, you shouldn't be so worried. It's like saying "no I don't have double vision, slurred language or seizures, but I think I have a brain tumor because I get headaches."

I understand your concern man, believe me. But I wish my only symptoms were twitching, I would have stop worrying about this stuff a long time ago. It just boggles my mind that people who twitch so routinely jump to the worst possible case scenario.

 

[BethU]

This is an off-the-wall guess, but I think that BFS patients are so apt to think their twitching cannot be benign ... whereas ALS patients think anybody who worries about benign twitches must be nuts ... is because BFS twitches are much stronger and are impossible to ignore.

With ALS, twitching is often not even noticeable unless you look for it. You can't even feel it most of the time. Also, it tends to appear later in the disease, when we PALS are dealing with really serious disabilities. If you can't speak or swallow, who cares if your tongue is twitching, especially since you can't even feel it?

It is just my sense that BFS twitches "appear" to be really serious to the sufferer because they are so strong and can't be ignored. I've never had BFS so don't know if that's the case, but from the anguish BFS patients feel, I'm guessing I'm right.

 

[bart1]

Maybe Beth is right. However the twitching is so bad that I really can't understand that this is something benigne. Also the stories of pals telling they had clean EMG's and were twitching up to 2 years before weakenss doesn't make it easier to understand either.
Calves go 24/7 for 22 months, the are like an exploded popcornmachine. My GP sends me back to the neuro because of the muscle pains and the increase of twitching in other parts of my body, maybe this is also why I'm getting very anxious again.

 

[tms23]

BethU,
you are absolutely right!

Bart1,
last week I had my 4 th clean EMG (after 6 month twitching). I am twitching all over my body (every five seconds in a different muscle) and 24/7 like waves in my calves. I am convinced we have BFS.

 

[AndyDJX]

Beth--

I think the answer to your question is all about perspective. To someone with ALS, the idea of worrying about twitching is ludicrous because it's absolutely nothing compared to what they are going through medically. But to someone who is totally healthy one moment, and then before long they are experiencing non stop, widespread intense twitching; it freaks them out. Then when they learn that it could be an early sign of ALS, it sets off the anxiety -- which in turn can cause more twitches!

The idea that "nothing is wrong" with non stop diffuse fasciculations is hard to accept because the unbelievable amount of twitching that BFSers get is absolutely not normal. It's just a matter of accepting the fact that whatever is wrong is not insidious, progressive or debilitating. Once they come to terms with that, it's easier to live with.

 

[bart1]

I am twitching all over my body (every five seconds in a different muscle) and 24/7 like waves in my calves. I am convinced we have BFS.

tms23, this is exactly what I mean. Do you twitch a lot in your arms?
Besides of the twitching I have 'knife cramps' in my legs and arms, so this worries me too.
I will know it soon, tomorrow I have to go back to the ALS specialist.

 

[tms23]

Yes, also a lot in my arms.

The twitches in my arms are unlike the twitches in my calves. The twitches in my calves are like waves 24/7 but not strong so they don't bother me. Different in arms, abdomen, butt, back,....these are often stronger, change in intensity and frequency, often hot spots,...
As you know cramps are very common in BFS (BFCS).

 

[olly]

hi bart.
i agree with what both andy and bethu said in there replys.

i have pls (10yrs) i started twitching in my arms and legs months after my other symptoms began.
for some years they thought it was ms,i know you can get twitching with ms due to nerve iritability so it never bothered me.
many with pls have twitching and there is more of a concern early on with pls that it may develop to als(about half develop als).
i have now been twitching over 9yrs ,if i did not twitch i would be more worried.

my son also gets twitching really bad plus cramp,he is 20yrs old.
we think his maybe to do with a back problem or his impaired kidneys.

as everyone said its not the twitching alone but other symptoms that make them a concern.
tim (lories brother) twitched for some years before symptoms as lorie has but its obvious that there case is familial, this is very very rare and can be slower progressing.
i can not comment on jennys case as i dont know all the facts.

the point is these cases are very very rare,you have more chance of winning the lottery than your bfs turning out to be als.
i do understand your concerns and the point of your thread as even on this well informed educating forum there can be some confusion on certain topics.

 

[awieleba]

Bart~

I understand your concerns very well, but if you have been twitching for almost 2yrs without any atrophy then that is a good sign that is not als. I have been twitching for about a year and half and I do have atrophy in my hands/forarms and feet/calfs. I still have clean emgs and no diagnosed. I would feel great and that I had bfs if i did not have atrophy, so if you dont have it then dont borrow trouble. I will say that the people that say twitching before any other sxor alone is never als ( according to thier docs) is not the case. My als doc nuero (who's dad passed from als and is a professor of als/neuro at a teaching medical hosp) says that in 10% or less of cases that twitching can be the first sign. I dont say this to scare anyone but to put out true facts that I was told. It seems that in most cases that those who twitch or have clean emgs that turn into als, will get that diagnosed in about 2 yrs from when they start seeing a neuro or getting emgs. So, as I have said before to the worried is that time will tell. THe longer you go with no diagnosed and sx, then that is good. It is hard not to have a name (it is for me). Time will tell and in the mean time live life to the fullest and spend it with those you love! That is what I do.

take care~

April

 

[bart1]

Hi,
I just went to my neuro who specializes in MND. His assistent talked to me and did the clinical. The neuro says all my symptoms still fit the Benigne Cramp Fasciculation Syndrome and after 22 months of this twitching he says he doesn't need to do more tests (EMG's). He's confident it's BCFS and has no arguments for ALS.
Do you think his conlcusion is enough based an this clinical ? (and a clean EMG back in dec 07)

 

[tms23]

I think yes. I am no more afraid after six month of twitching and a clean EMG.