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Alexandre

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Learn about ALS
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FRA
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Paris
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Paris
Hi all,

Yes it's me again, I'm sorry.
4th May , I thought I was really getting some answers and a new emg and a final diagnosed.

I arrived at the hospital and I really hoped I was going to see the big ALS specialist. But instead I got a assistant( 2nd year neuro student). All his assistents are neuro students.
They work like this: they examen you, go to the professor, tell him would they found, he tells what he thinks it is and what should happen.
So she examens me and found:
- brisk reflexes in all 4 parts ( I asked if this were hyperreflexes, she said yes but within normal limits - don't understand that) even a slight increase of reflexes on tendens (or something like that)
- Shown her the dent in my hand, didn't think it was real atrophy because I don't show weakness
- No babinski or clonus
- Tremor in right hand (my hand and arm is shaking really badly lately, I thought it was clonus she said not)

She concluded that clincially they are not concerned for MND 'at the moment'

I'm completely lost with this, in my opinion, and I know I'm not a neuro I got upper and lower signs.

- 24/7 twitching in 1st dorsal interosseus in both hands
- hyper reflexes
- increase of cramps (had 2 night cramps in 2 weeks time and today the whole day cramping in both legs - not full blown)
- some kind of atrophy in hand

They only thing I don't have or notice is real weakness.

She said a new emg was not necesarry.
It's been going on now for 2.7 years.
They keep diagnosed on BCFS but it this it?

I read a couple of stories here lately of neuro's telling it surely isn't als but afterall it was.

What do you guys think of all this? Do I really need to worry, push for more or is it really BCFS, also possible with this non stop twitching in hands (and calves)

Someone, please?
Thanks
 
All I can say is ,go to anALS specialist...
 
This was at the ALS specialists practice, he listens to what the assistants found in the clinical and than say what it is and what's next. You only get to see him if they think it's als and then he will exam you himself.
you thinks I got reason to worry?
 
Hard to say whether or not you have reason to worry, but I would DEMAND to see the specialist, not an assistant - especially after 2.7 years.
 
Last Feb. I also went to another neuro. A professor in muscular diseases. I don't know if he is a real ALS specialist. But he has seen me multiple times during this 2.7 years. He concluded that the clincial was normal (back in Feb) and thinks nothing is wrong and says he wants to do an emg have it black on white - but this emg can be done until end of July (long waiting list)
 
I saw two Nero drs...first was not a specialist..he almost insisted that I see someone who specializes in ALS ...that is still my answer...you have to see a dr that specializes ...very important...
 
Handinhand is right, someone that REALLY knows what they're looking at will be able to tell you if ALS is a likely cause. Personally, from your description, I wouldn't be worried about ALS.
 
You did get answers , they do not think it is MND. The dent in your hand is NOT athophy. Be happy! HUGS Lori
 
Thanks guys for the responses
But here, where I went (where the student examened me) all the ALS patients go, it's a neuromuscular department. I've been there 2.5 years ago when I the twitches started, then I saw the specialist for 2 minutes, he looked at my legs (after the ass told him my story and clincial) and said he thought I should not worry, ofcourse this was 2.5 years ago. Now I only saw the assistent.
But this is the best place to go here for ALS patients. I think I'm going to email this professor and ask if he will personally see me.
 
Alexandre- I would take reassurance that everyone who has seen you does not believe you have a neuromuscular disease, but I can understand your desire to see the ALS specialist and not one of his assistants. I would definitely email him and try to get an appointment with him directly and perhaps he will recommend another EMG. but do listen to whatever he has to say.

Good luck-

Sandra
 
You don't need to be an ALS specialist to evaluate reflexes . . . and you were told that your reflexes were within the normal range (maybe the high end of normal but none-the-less, normal). How you are now saying you have upper motor neuron symptoms is beyond me or any other rational person.

YOU DON'T HAVE WEAKNESS IN YOUR HAND (as you have told us) . . . and if you don't have weakness, then you don't have muscle atrophy, especially muscle atrophy due to denervation and especially muscle atrophy due to ALS. I believe that is the billionth time I've said that to you . . . and now, more importantly . . . you were once again evaluated and told it isn't muscle atrophy for the same reasons I just stated. IF YOU DON'T HAVE WEAKNESS, THEN YOU DON'T HAVE ALS. Once again, any rational person would realize that.

You have been twitching for 2.5 years and have no other symptoms to speak of in that time, which means absolutely no progression, which is a criterion for ALS.

So let's look at this once again: You have been twitching for 2.5 years . . . have no lower motor neuron symptoms . . . have no upper motor neuron symptoms . . . have been evaluated numerous times . . . have been told you don't have ALS but rather, BFS. Would you like to know why? Because all you do is twitch with no other problems, which is the definition of BFS. Once again, any rational person would realize that . . . but obviously we're not dealing with a rational person.

Good luck with your ALS quest and getting an appointment with an ALS specialist, who is obviously busy treating people who really have ALS and most likely doesn't have time for someone with BFS. Let's hope your next thread says: "Went to psychiatrist" because that is what you need to get over this ALS obsession. As always, I'm really trying to help you, but you simply won't listen to a thing I, or anyone else says to you.
 
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Wright,
thanks for the answer, however it's harsh again :)
This 'student neurology' thinks it's not atrophy because I don't show real weakness, I however have to say I have slight problems with picking up a pen.
Secondly where the dent is, there is continuous twitching of one muscle, and I always heard/read that is more bad. It really hurts at that place. I'm now taking rivotril to ease it.

A part of the twitches I also have cramps, suffered from 2 night cramps in 2 weeks and have cramp feelings in legs and bad hand all the time. I don't know if that is something.

I've read a couple of posts here (new members) where neuro told them it wasn't als but it was.
I also read that JustJ had clean EMG's and still ALS. Took 4 years for a diagnosed. And I may not be scared?
Maybe I'm overreacting but this continuous hand twitching and dent is really giving me a hard time to believe this is just bfs. Sorry
 
Stop looking at all the worst case scenarios already. You've been told that it doesn't seem like ALS. You've been told over. and over. and over.
You may have something wrong with you that's causing twitching, cramping and some brisk reflexes; but without dramatic weakness why the hell are you worried about ALS still?

Is it possible that you have ALS? Sure. But that possibility is so freaking tiny, you're crazy to be paying such a disproportionate amount of attention to it. Benign Fasiculation Cramp Syndrome. It's real, and you match all of the symptoms for it. ALS is defined by progressive weakness, which you don't seem to have.

Move on with your life.
 
P.S.

I just noticed you said something about JustJ. JustJ's husband was diagnosed with PLS, which IS NOT ALS. EMG's are clean with PLS, because PLS involves upper motor neurons AND NOT lower motor neurons. Your "symptoms" would be considered lower motor neuron symptoms (i.e. your muscle atrophy, which isn't really muscle atrophy), so if it were truly muscle atrophy, your EMG would be dirty . . . but again . . . you don't have muscle atrophy or weakness . . . I REPEAT . . . you don't have muscle atrophy or weakness!
 
Wright, JustJ's husband diagnosed has changed into ALS, he had been wrongfully diagnosed with PLS. Now it's ALS, you can ask her that. And he had clean EMG's. But I always thought you said clean emg is no als...
I didn't have an emg (only 2.5 years ago)
 
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