My face is being attacked!

Information about how to manage or reduce the severity of BFS symptoms

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Re: My face is being attacked!

Postby Barbie800 on September 5th, 2012, 4:59 pm

I've had BFS (or whatever you want to call it) for almost 4 years. I twitch from head to toe everyday. I'm perfectly healthy otherwise. This stuff messes with you head but it's harmless.
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Re: My face is being attacked!

Postby Mellabella on September 13th, 2012, 10:41 am

My dr. has been on emergency leave for weeks so I wasnt able to get my MRI report, but yesterday I demanded to speak to a nurse and learn my results. The twitching I can deal with this but these al$ fears I have been having all stem from the neck weakness issue and I wanted anwsers. So this morning I got a call and the nurse told me my cervical MRI report shows minimal disc bulging. I asked for more information, but she said thats all she could give and I had to follow up when my doctor got back.

So is that the cause of the weakness??? I dont know much about bulging discs except that there usually caused by trauma. I have had no trauma to the neck. Any ideas?
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Re: My face is being attacked!

Postby jerry2 on September 13th, 2012, 11:05 am

SuziQ wrote:Besides that, there IS weakness with BFS. It is merely called perceived weakness because it cannot be detected on clinical exam. If a neuro does strength testing and doesn't find anything "grossly" abnormal, that doesn't mean your symptoms aren't real to you. It only means that the weakness you are feeling is not clinically significant. Weakness in association with **S or NMD causes profound disability and functional deficit, rather dramatically and immediately in the disease process. You would quickly be unable to swallow, chew, or speak if you had **S. Besides that, you are way too young.


Yes there is definitely weakness, but not a significant one, I agree. The weakness with MNS is so severe you can not believe now and so quick it is hard to believe. Do this test:

Put a leg into a position that it falls asleep. When you stand up, it will become tingling. Try to lift toes as you are walking on heels only. You will not be able to do that as your nerve was compressed and needs a minute to come back to normal. This is the kind of weakness doctors search for not the type that I could run 3 miles and now I can only run 1 mile.

I can not even run because of ankle pain from BFS and this is also not clinical weakness, it is pain weakness. It is different and doctor know it. In pain weakness you push and you suddenly release because it starts to hurt so much (like my thumb grip as I have thumb pain). In weakness he is looking for you push easily with no pain and you feel like you are giving 100% power but the doctor sees that there is a very low limit to it, like he easily pushes back and "defeats" your limb with his push.

So not all weakness is the same. The MND weakness is rapidly progressing and severe. And I mean SEVERE. No test is needed for yourself. You know it.
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Re: My face is being attacked!

Postby Floydian on September 13th, 2012, 2:41 pm

Mellabella wrote:So is that the cause of the weakness??? I dont know much about bulging discs except that there usually caused by trauma. I have had no trauma to the neck. Any ideas?


Hi Mellabella, I also have a bulging disc in my neck and didn't have any trauma (as far as I know :) ) I'm quite tall and due to my posture and as I work on a computer whole day long my bulging could be related to that.
According to my doctor it could do a lot of things if the bulge pinches a nerve. So in my opinion I think weakness could be a symptom of a bulging disc.
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Re: My face is being attacked!

Postby SuziQ on September 13th, 2012, 7:52 pm

jerry2 wrote:
SuziQ wrote:Besides that, there IS weakness with BFS. It is merely called perceived weakness because it cannot be detected on clinical exam. If a neuro does strength testing and doesn't find anything "grossly" abnormal, that doesn't mean your symptoms aren't real to you. It only means that the weakness you are feeling is not clinically significant. Weakness in association with **S or NMD causes profound disability and functional deficit, rather dramatically and immediately in the disease process. You would quickly be unable to swallow, chew, or speak if you had **S. Besides that, you are way too young.


Yes there is definitely weakness, but not a significant one, I agree. The weakness with MNS is so severe you can not believe now and so quick it is hard to believe. Do this test:

Put a leg into a position that it falls asleep. When you stand up, it will become tingling. Try to lift toes as you are walking on heels only. You will not be able to do that as your nerve was compressed and needs a minute to come back to normal. This is the kind of weakness doctors search for not the type that I could run 3 miles and now I can only run 1 mile.

I can not even run because of ankle pain from BFS and this is also not clinical weakness, it is pain weakness. It is different and doctor know it. In pain weakness you push and you suddenly release because it starts to hurt so much (like my thumb grip as I have thumb pain). In weakness he is looking for you push easily with no pain and you feel like you are giving 100% power but the doctor sees that there is a very low limit to it, like he easily pushes back and "defeats" your limb with his push.

So not all weakness is the same. The MND weakness is rapidly progressing and severe. And I mean SEVERE. No test is needed for yourself. You know it.


I actually need to clarify what I said. It isn't that the weakness which we feel with BFS can't be detected on exam; it is rather that the weakness isn't clinically significant. I remember squeezing my doctor's hands and thinking, "my gosh, he HAS to be able to tell how diminished my strength is," but the fact that I could squeeze at ALL and that my hand grips and reflexes were reasonably symmetrical bilaterally was what was clinically relevant.

In the worker's comp world, our physiatrists often spoke of clinically "subjective" complaints vs. "objective" findings. Physicians are skilled at differentiating between the two. With BFS, we often feel like rag dolls who've been put through a meat-grinder, (or a pasta-press, for us vegetarians:) but our strength testing does not indicate any concerning motor deficits.

It isn't all that likely that mild disc bulging will cause clinical weakness, but perceived weakness is common. Most folks do get some degeneration of the spine as we age, so bulging isn't a terribly irregular finding, especially as you approach the third and fourth decades of life.

Blessings,
Suzi
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