ALS or BFS???

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Re: ALS or BFS???

Postby Derek on January 11th, 2014, 6:04 pm

Update- Went to follow up appointment (6 month) at University of Chicago. My Neurologist changed Dx to probable ALS from possible ALS due to some slight weakness in left hand. He did not do another EMG. Other than the weakness, no change in symptoms. He put me on Baclophen and Clanazapam for muscle fasciculations. Went to a more local neurologist a month later and he doughts it's ALS. Dx based on examination of motor skills and reflexes. He believes it's more benign due to muscle twitching all throughout body with minor weakness in left hand and no atrophy. Just want a more consistant Dx. If anyone can recomend an ALS specialist or just a credibal neurologist, that would be helpful. Thank you.
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Re: ALS or BFS???

Postby Gamindsoc1509 on January 11th, 2014, 7:22 pm

Hi Derek,

I think some people might have some answers for you however I notice your information is a little bit scarce which makes it quite hard to interpret?

For example, how long have you actually had twitches for before you saw the first doctor. Are they everywhere? On one side of the body or primarily in one limb. Also what do you mean by 'spasm' exactly and how often do they occur? Are they painful?

What was the gap between your visits to neurologist.

I just want to point out that your symptoms are not the norm intro for ALS and you are 30 years old. This makes a big difference. For example, I recently was reading a scientific study conducted on 400 ALS patients and the youngest patient in that group was 33. Should give you an indication of the rarity of getting this under the 40 mark.

All the best
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Re: ALS or BFS???

Postby Tiredofbfs on January 11th, 2014, 10:22 pm

I can't buy your story for two reasons

You said you were diagnosed with possible ALS 5 month ago. You joined in August 2013 so your diagnosis was made around April 2013. So why you waited till August to post your finding ?

Also you said a follow up in 6 month. So 6 month from April would be around September again why would you post in January ?

You said they diagnosed you with probable ALS because of weakness but ALS is only diagnosed with weakness and finding in emg.
Mayo doctors are not idiots to diagnose you without emg

I don't mean to be rude but your information don't add up.

This post will cause unnecessarily fear for those who are suffering with bfs

Please elaborate on that more.
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Re: ALS or BFS???

Postby Tiredofbfs on January 11th, 2014, 10:27 pm

In addition , you sound very cool with it. I don't see fear in the way your post is written
I hope you will be ok but it's hard to believe it.

Possible to probate without emg

That tells me two thing

You either lying or this whole bfs site should be terminated for giving people misleading information
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Re: ALS or BFS???

Postby Tiredofbfs on January 11th, 2014, 10:33 pm

And since august you only have written 1 post ?

Two month of my twitching i had 11 post.

I ask all the vet to chime in and explain how could this be possible.

But either way I wish you the best
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Re: ALS or BFS???

Postby J4son on January 12th, 2014, 2:50 am

Tiredofbfs,

I do not think that attacking Derek’s story, and doubting it is the right way of facing our own fears. I don’t see what’s wrong in his story and why someone would create a hoax over several months. This site is not a kind of closed cocoon where members refuse any contact with the real world, and rejects any story that is not in conformity with the norm here.

Plus you said he is either lying or this site should be closed for misleading people. I don’t agree with these two radical options. This site is about people diagnosed with benign fasciculation, and Derek from the beginning was told he is a possible case of ALS.

Derek, I wish you well, and since you seem to have two conflicting medical advices by two different neuro one saying probable ALS and the second doubting it’s ALS, you should seek more opinions and keep investigating all this, and please keep us updated.

The only strange thing in your story is that in one of your early posts you said a second opinion would be made 6 months later based on a new EMG. Which sounds perfectly logic. So I find it weird for a doctor to jump directly from possible to probable ALS based only on a slight weakness in your hand without performing a new EMG and other tests.

Jason.
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Re: ALS or BFS???

Postby Gamindsoc1509 on January 12th, 2014, 4:57 am

Actually I have one other important question. You mentioned in the first post having had 3 opinions. And you said 1 of 3 opinions was possible ALS. Now you said that one neurologist moved you to probable ALS.

Can I assume that it's the same neurologist that said possible to probable?

If so I assumed that means the Mayo Clinic may NOT have said this?

If that is the case it sounds as if the one neuro at uni of chicago may be fear mongering. Do you know his credentials?

One thing in common with possible ALS posts and even the one or two they wound up saying they had ALS on this forum is that there was often a lack of important detail so it's very hard to give you some good feedback.

If you get a chance to answer these questions and the few posted by others above I am sure many people can give you a clearer picture based on their experience.
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Re: ALS or BFS???

Postby Tiredofbfs on January 12th, 2014, 11:04 am

I didn't mean to be rude but this post scared me and many other.

I m just confused. How could he be given the probable diagnosis from mayo doctor without an emg. ???
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Re: ALS or BFS???

Postby raindog on January 12th, 2014, 1:34 pm

Raindog is still here and still enjoying life. Still twitching like a trooper too. Getting good relief from neuropathic nerve pain in both legs by medicating on indica dominant cannabis using a vape. Derek i have evidence on on going (chronic) denervation in both lower legs and absent deep tendon reflexes at knee and ankle again in both legs....i have a lower motor neurone type syndrome but in all honesty i'm as good now as i was when it all started over 7 years ago . The only difference i see from what your story tells is that you seem to indicate both upper and lower motor neurone involvement. Now i also have tons of fasciculations in my torso, arms, neck, shoulders, face, eyes etc so it may not be all doom and gloom if my case is anything to go by. Keep your chin up it may not be as bad as you think it might be.
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Re: ALS or BFS???

Postby DoubleD on January 12th, 2014, 11:52 pm

We'll I am definite know export but will give my 2 cents.

Without REALL WEAKNESS With FASC you do not have ALS. Esp if it's all over.

My point: a muscle starts to dies because it is not getting juice. It's not going. So it sends out a distress signal telling your nervousness system to send down nourishment. That's where the twitching comes in. There is real weakness before twitching. Not tired or slow hand or believed weakness but I can't move it tired

I have seen plenty of ALS twitches. Not at all like BFS. not enough juice

Keep in mind that doctors have to keep the door open for ANY diagnosis. Nobody wants to get sued. I need more info on the emg findings. Unless that has changed it can pretty much say. ALS or not.

It doe not sound like ALS to me. It kinda sounds like you need to quit reading the notes. They could just be saying things. Y They know ALS when it walks through the door. HOWEVER there are a million motor issues that could be damaging.
" By this all men will know that you are my diciples, if you love one another." John 13:35

10 years BFS
24/7 twitches all over
Cramps, tingling, buzzing, and a host of other weird things
Until you own your BFS, you will never disown als
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