Was misdiagnosed with BFS by head of an ALS center

[Greensun12]

i'll tell you my story and I will also scan copys of my doctors dictations and test results so that you all can see proof.

History of fasiculations (widespread) approx 6 months prior to first EMG which was normal. Neuro exam normal at that time. Only subjective loss of strength.

Now 12 months have passed since initial symptoms and my diagnosis has changed to probable/likely, pending next EMG(currently ininsured)

Now I feel like there is a lack of urge to diagnose this disease at an early stage due to no treatment options, but in my situation and lack of insurance an early diagnosis would have been crucial.

12 months following widespread fasics and i now have virtually no use of the pinky on my right hand, although muscle atrophy is widespread there is some remaining strength(i am able to climb a flight of stairs)

 

[Blizna]

Sorry to hear that but how they could diagnose you earlier if you (as you wrote) had clean EMG and normal neuro exam? So you had absolutely no other signs and then only diagnosis of BFS is available. There is new study suggesting that label "benign" should be applied after 4-5 years of fasciculations/cramps. Quite discouraging but it is just due to cases like this.

 

[Alyoop]

I agree with Blizna. They were correct to not diagnosis you with absolutely no evidence of ALS. It does not usually start with widespread fasciculations. The fasciculations would have shown up on your emg if they were relevant and other abnormalities would have shown as well. An early diagnosis if incorrect is reckless.
Now you have developed a problem in your little finger and the doctors are now going to do another emg to see if it's ALS.
Sounds like you have had good care. Most neurological illnesses take a while to form. That's why they usually either book a follow up in 3 - 6 months or ask you to get back to them if the condition changes.
I am not sure what you are expecting from your doctor.

I hope that your emg will be ok and you do not get a definite ALS diagnosis of ALS. Have a lovely Christmas
Aly

 

[Greensun12]

I agree with Blizna. They were correct to not diagnosis you with absolutely no evidence of ALS. It does not usually start with widespread fasciculations. The fasciculations would have shown up on your emg if they were relevant and other abnormalities would have shown as well. An early diagnosis if incorrect is reckless.
Now you have developed a problem in your little finger and the doctors are now going to do another emg to see if it's ALS.
Sounds like you have had good care. Most neurological illnesses take a while to form. That's why they usually either book a follow up in 3 - 6 months or ask you to get back to them if the condition changes.
I am not sure what you are expecting from your doctor.

I hope that your emg will be ok and you do not get a definite ALS diagnosis of ALS. Have a lovely Christmas
Aly

the given diagnosis of "BFS" is much different than giving someone a diagnosis of possible MND... as i agree that no doc is going to jump to DEFINATE MND that early, that WOULD be wreckless... but to write it off as BFS when i presented with widespread fasics and difficulty swallowing (visited an ENT before i even saw the neuro)

 

[Blizna]

I have probably overlooked that..so your symptom was widespread twitching AND difficulty swallowing, nothing else? The problem is that widespread fasciculations are not typical for ALS in the beginning. I cannot remember but as far as I know slurred speech is the first thing in the bulbar onset, swallowing issues follow. But if you had confirmed issue with swallowing and fasciculations (I think you would have had them in tongue as well), then I agree giving pure BFS diagnosis was not correct.

 

[mhswarriors]

Wow, you drop this bomb on christmas eve. This will send hundreds of people into panic. I too have widespread twitching, and was told it was benign. I still believe it is benign for me, as after 8 months I do't have any other symptoms. I hope people don't read too much into this. first there is no diagnosis yet, and second this would be incredibaly rare. Widespread twitching is not the early signs of als in almost all cases.

I am sorry to hear you are going through this, but there are lots of anxious people out there, and this is going to bother them.

 

[Zaphoon]

In my opinion, the doc that gave you the diagnosis of BFS did so responsibly. He called it as it was and that's all anyone could have done. I'd be really surprised if you wind up with it changing to a sure diagnosis of ALS. I agree with the others: ALS is not known to present with wide-spread fasciculations.

 

[alex scared]

hi all . . I think that blizna/ zaph are spot on . . What else could he diagnose . . If the fasciculation were sinister then they would have shown on your emg. . As for your swallowing trouble then if its bulbar you are worried about then usually your speech would be hit way before swallowing . .as for bfs they should re name it the 'make the patient crap themselves about als syndrome.' i hope things turn out well for you . . God bless alex

 

[sadiemae]

Muscle Twitching: Is it ALS or Anxiety or BFS? Best Information for Terrified People - Associated Content from Yahoo! - associatedcontent.com PLEASE all you twitchers read this. All of it, there are links within the article that are really good.

 

[Alyoop]

You never mentioned swallowing difficulties in your post. The opinion of the ENT specialist is not mentioned either! That would be important and necessary information. Did he find a major problem with your swallowing after all the tests? If not then your neurologist need not consider that in his differential diagnosed.Still agree with everyone, sounds like you have a very responsible Dr and you still dont have a diagnosed yet.
I hope that it turns out OK.

 

[Blizna]

sadiame: please note that he was given dg. of probable-likely ALS, he is not only "twitcher". I agree that mostly widespread fasciculations are benign, but not always. The recent study (Fasciculations and cramps: How benign? 10-2010) presents 4 cases of BFS progressing to ALS within 2-4 years. Though rare, it can happen and we should not refuse that fact.

 

[sadiemae]

I was posting this mainly for all the "twitchers" that will come here and read this post. HUGS!

 

[Tokahfang]

Climbing stairs is not an example of "some remaining strength".

 

[mhswarriors]

Blizna, one could make an arguement that it is no more common for some one with BFS or BCFS to develop ALS, than the general population. No one is immune to it. These people could just be the unlucky ones. I also don't understand how you can get a "probable/likely" diagnosis without EMG eveidence? That would be like going to the doctor witha headache, and him saying you have "probable/likely" brain tumor.

I am not discounting this story, but it would be very rare. I am sure some other PALS could chime in with the same response. I have seen the report you talked about. In 4-5 years I could have cancer. Does that mean twitching was caused by cancer.

The facts are twitching without weakness, atrophy, or reflex changes are considered benign. Every neuro will tell you that. There simply isn't another way to look at it. This would be the first time to my knowledge this has happened to anyone on this board. And I don't know of anyone on about.bfs that has had this happen. Clearly very rare if indeed the case. If is FAR more common to have BFS, and never develop anything else.

 

[Blizna]

mhswarriors: Simly statistics will tell you it is not true unfortunately - the authors observed 4 people initally diagnosed with BFS who developed ALS in next 2-4 years. If it was 1 person, it could be the case of coincidence..but not all of them. And in addition, symptoms some of them appeared in the places affected by fasciculations for years. Even earlier there were reports like that, this is only the first study to confirm its rare but it can happen. That study clearly states that usually it is benign but to tell it secure the neuro should observe the patient for at least 4-5 years. As these are ALS specialists, I believe they know why they did this study.
BTW, Bart1 from aboutbfs.com has been given probable ALS diagnosis after dirty EMG and then diassepared. People there called him liar, fake..because they do not want it to be real. I do not want it either but I can at least accept it just can happen.
On this site, there were more members who had twitching years before diagnosis, the last one has been diagnosed recently - Artisto.

I absolutely agree BFS is far more common and mostly its just BFS.