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scottj0987

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Hey guys,

So this is my story. I am a 25 year old male. Have had my fair share of diseases in life, (IBD diagnosed as a teenager and some rheumatic issues related to that) but up until now nothing that is neuromuscular in its character.

This spring (´11) I felt more tired than I had done ever before and felt unsteadiness when walking. Symptoms just accumulated ever since, cramping/tiredness in my legs, slight atrophy of left arm (all the way from biceps to hand), slight atrophy in left leg, fatigue, pain between my shoulders and fasciculations that started in one thigh and now has spread to all over my body.

Saw a neuro 1 month ago who sent me to an MRI (brain, brainstem, spine --> T6 level) which came back OK. She ruled out MS but said my history suggested ALS. She nevertheless decided that benign fasciculation syndrome was the most probable diagnose at this stage since my status at that time was unremarkable.

I really don´t believe the BFS theory since my condition has steadily gotten worse since then. Also I´ve learn that BFS is a diagnosis of exclusion, so that it´s much to early to make that diagnose at this point.

No heredity for neuromuscular disorders in my family. I got the swine flu vaccine in December 08. Have always been in extremely good shape.

Had an MRI (the rest of the spine) 2 days ago and then received muscle relaxant. This felt like heaven and made me able to do some jogging the day after. Not a good sign either that the muscle pain went away with that medication I suppose.

Now scheduled for EMG. I am totally convinced I have the disease but I guess I have to wait for the EMG result before anything is definite.

Best wishes to all of you.

/Scott
 

notme

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A muscle relaxant that made you feel better is a good sign. It's a sign that you might be simply having spasms in the muscles. ALS DESTROYS the muscles. But, in early stages, it doesn't normally cause any pain at all. If she diagnosed BFS, she obviously isn't seeing the atrophy you are--because BFS doesn't cause atrophy. When there IS actual atrophy--there is also loss of use in that area---namely paralysis.

ALS at your age would be very, very rare---it usually strikes those in the 50-60 age group.

So, before you freak yourself out and convince yourself you have ALS--let them do the EMG.
 

Bliz

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You did not say if the doctor noticed the atrophy and what about the exam? Reflexes, power... I agree with notme, BFS indeed does not cause atrophy but weird sensory symptoms are quite common. I assume if she saw atrophy, she would not diagnose you with BFS.
Good luck and let us know once your EMG is done.
 

scottj0987

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Sorry if I was unclear about the atrophy, at the clinic one month ago I was not aware of any, nor did my doc notice any. The examination was normal.

I discovered the atrophy only a few days ago after having been to the gym and doing some of my standard triceps exercises. The day after I had this unusual ache in my left triceps which I have never experienced before. When I took a closer look I saw that one of the triceps heads was almost diminished on my left side. I therefore measured it and saw that the left arm is 0,5 inches less in its diameter continuently from upper arm to under arm compared to my right arm. Even the hand muscles are significantly smaller on left side. Also my left arm feels weeker than the right one.

The t-shirts I wear don´t fit as well around my left upper arm as the the right one. On the left side there is a "gap" between the lining of the t-shirt and the arm whereas on the right side they are aligned against each other. Never had this before and for me It´s like a confirmation of ALS(although I know I´m not supposed to draw any conclusions until I have had the EMG).

I´m 100 % I have ALS(considering the symptoms i mentioned in my first post) although I try to live in some sort of denial to just being able to let time pass by until the emg is done.

The reason I wrote that I had the swine flu shot back in 2008 is that I suspect that this is what gave me this condition. They used an adjuvant (squalene) in it which by some people is considered neurotoxic and might trigger ALS from what I´ve read. I don´t have any reliable sources that I can make references to though. But it could explain why I got this condition at such a young age (if I´m diagnosed) when there is no heredity in my family.

I will get back to you once the EMG is done, will try to get it as soon as possible. The waiting is just so horrible, feels like I am loosing my mind.

Best of thoughts to everyone out there.
 

notme

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Before you sign that death warrant on yourself by your 100% certainty of ALS, you should know that your .5 inch of difference in muscle size does not mean ALS.

The majority of the population have limbs of different sizes--some up to an inch or more.

In ALS--there is LOSS OF USE in the area struck by the disease. Hands that no longer lift. Fingers that can't push a button. Feet that drag and trip us.

If the neurological exam had shown anything abnormal, she would not have diagnosed BFS. I don't even know why she'd mention ALS to a 25 year old complaining of pain!

PAIN is not a presenting symptom of ALS. PAIN is most often a problem within muscles or nerves--but not the same nerves that ALS strikes. Those with ALS that have pain also have severe UMN signs that simply aren't missed by a neurological exam. They are more than apparent to a neurologist.

So, wait for your EMG and enjoy your life, for heavens' sake. If you continue to be 'convinced' by those symptoms, you'll notice they worsen. You'll be obsessing more than you already are. I've lost the use of my left hand and arm, the right is following and my legs are nearly useless--but one thing I've NEVER done is taken a tape measure to them looking for atrophy--it's painfully obvious to anyone that stares at my arm.

Even with marked atrophy, loss of use and a whole host of abnormal neuro exams what the doctors are NOT sure of yet--is ALS. It can ONLY be ALS until it can't be anything else! Every day wasted is a day lost forever. Those are great quotes to live by.

Good luck
Hope
 

Al

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Millions had swine flu vax. They aren't here so what makes you think it caused your problem?

AL.
 

trfogey

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If you had symptoms of ALS, your neuro wouldn't have called it BFS. The fasciculations in ALS are anything but benign, and they are accompanied by a host of other symptoms you apparently don't have. That's why your neuro called it BFS -- the lack of other symptoms exclude everything else.

Just thought I'd clear that up for you.
 

kmendsley

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Dear one,
Please don't convince yourself of a disease that you have not been confirmed with having yet! Pain in early stages is not associated with ALS, everyone has a difference in size between the left and right side of their body...and like another member said...those with ALS don't sit there with a tape measure to see the atrophy..you can see it from ten feet away! If your were diagnosed with BFS stick with that until you have another one. EMG will give you final results..no doubt it will be clean. Take another look at BFS as it describes your symptoms a little more. Good luck to you.
 

LizT

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you say BFS is a diagnosis of exclusion... maybe so, but so is ALS. Like the others have said, it could be many things.
Your age alone says its most likely not. Sorry, but all you can do is wait. And if your doc says BFS, and didnt say maybe ALS, how is it that you are more qualified to say otherwise? Its been made clear to you that everyone has different sized limbs, so how do you know its ALS and not BFS?
 

Bliz

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You said you discovered deemed atrophy few days after clean neuro exam...then its not atrophy,it does not appear overnight and without weakness..I mean, it takes a while for the weakened and denervated muscle to shrink, definitely its matter of weeks, not days. So I assume your neuro did not see it just because there is no atrophy..
 
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notme

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preying on those with als and those that FEAR ALS is just wrong. Go away
 

Alyoop

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Oh, don't you just love these worms, Poisonous, dangerous bottom feeding maggots......I have discovered a new breed.
Go away..........
 

Ms. Pie

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I reported it. Jerk.
 

Alyoop

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Thanks Marta, and Scott, no one is aiming the above 3 comments at you, hope you realized.
Clearly the dog lover does not love humans, sad.
 

notme

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Oh yeah, I hit the report button after I replied. I actually forgot there WAS a report button when I was typing my short tirade. $150 to test my hair, please.

His first post was deleted by Joel--he'd posted his spam in a member's thread that had just lost her husband. TROLL is too nice a term

Sheesh I post . com anything and it goes to moderation.
 
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