New to forum, not sure if I have BFS...symptoms/tests inside

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New to forum, not sure if I have BFS...symptoms/tests inside

Postby MikeN on September 2nd, 2004, 7:33 am

Here's my story...

I'm a 24yr male with a history of good health. When I was 20yrs, I developed aching in my hands/wrists. I work on a computer nearly all day. No one could figure out the cause of this. It was always bilateral. In early December 2003 I got severe burning in my elbows. Within two weeks it moved elsewhere in my arms. The pain was so bad that I went on 100% disability from work for a few months. In January 2004 I began noticing mild jerks in my hands, arms, legs, feet, and torso. This was only noticable during inactivity...not necessarily when I'm about ready to fall asleep...but it's the same kind of jerking. The burning in my arms slowly went away, but still have the jerks...and very occasional burning in my arms. Within the last month I've noticed more pins and needles feelings in my hands and very recently in my feet. It is not constant throughout the day, but it occurs enough that I'm concerned. I rarely experience twitches where I can see my muscles "rippling", but it has happened a few times. It has only noticably occured in my hands and lower arms. The symptoms are always bilateral (usually more severe in one arm/hand over the other). One day (a few weeks ago), my hands were doing involunatary things...cramping, twitching, etc. This eventually passed and it is rare for this to occur. A few days ago I noticed the muscle under my chin twitching (visibly) for a few minutes. I have not experienced this before or since. Other than a few occurances of weakenss (less than 5 since December), I have no loss in strength...even while I experience symptoms. I've also experienced some general fatigue from time to time.

After December 2004, I was first diagnosed with thoracic outlet syndrome (TOC) and went through physical therapy. I questioned it and had a thoracic surgeon rule that out in June 2004. At the same time of the TOC diagnosis, a Chiari malformation (low lying brain cerebellar tonsils) was found in my MRI. Otherwise, my brain looks normal. In June 2004 I had a cine-flow MRI that showed no cerebral spinal fluid flow near my Chiari malformation. I have been told that this does not necessarily mean my symptoms are from the malformation. The neurosurgeon does not really think the Chiari malformation is causing my symptoms at this time.

Here are the results of my June 30, 2004 EMG, performed in Pittsburgh, PA at UPMC:

Manual muscle testing is 5/5 for hand grip, hand intrinsics, wrist extension and flexion, elbow extension and flexion, shoulder abduction, knee extension and flexion, hip abduction and adduction, and ankle dorsiflexion and plantar flexion. Reflexes are 2/4 for biceps, triceps, brachioradialis, knee jerk and ankle jerk. The knee jerk reflexes are slightly brisk. Pinprick sensation in the arms is normal and symmetric and comparable to pinprick sensation along the neck and upper chest wall.

All of the nerve conduction numbers are within normal limits. The electromyography is somewhat greek to me. However, there is a "N=normal" note on the top of the results and for all of the muscles, an "N" is noted. However, there were signs for occasional fasciculation "potential 1-2 per 30-60 seconds". The fasciculation potentials were "small". There was "overlying Latissimus Dorsi activity partially obscuring insertional activity" for the left and right "Parasp - Mid Thoracic" muscles. There was "overlying muscle activity partially obscuring insertional activity for the "right Genioglossus" muscle.

This is the section of the comments that concern me:
"Although I cannot 100% rule out ALS or a motor neuron disease, the study thus far indicates more of a benign etiology of the fasciculations."


I have an appointment in Pittsburgh tomorrow with a Neurologist. It sounds like I don't have ALS, but I'm concerned about some other sort of motor neuron disease. It sounds like the symptoms common on this board are what I experience. However, I don't notice twitches very often. I'd rather call them mild jerks than twitches. Do my symptoms sound more like BFS to you guys? I continue to worry that this could be some motor neuron disease in early stages. Any advice or comments would be very much appreciated. Thanks!

Mike
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Postby garym on September 2nd, 2004, 8:00 am

Mike,

Sounds like you had an essentially clean emg study, with the exception of fascics (which many of us had also). So I think that is pretty encouraging. Don't get to concerned about the wording on the report about als/mnd. Good strength, reflexes, and no noted fibrillations/s-waves or other irregularities, sounds like benign fasciculations to me. Given your other medical issues, I don't know if you would fall under the dx of BFS, but like many of us have been told, if the twitching is from benign processes then you have BFS. So you probably belong to the club.

Talk to your neuro and let us know what he says.

Take care,

Gary
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Postby MikeN on September 2nd, 2004, 8:13 am

Thanks Gary

I don't know how to interpret the results from the EMG very well, but it does show all zeros for p wave, fib, and other. The fasc column has mostly "+/-", a few zeros, and one "1+" (Extensor Indices). Everything for the "volunt motor unit potential" section shows "N", which should mean "normal".

Any idea what the 2/4 reflexes for biceps, triceps, brachioradialis, knee jerk and ankle jerk might mean? I think he's referring to the neurological exam given minutes before he started the EMG.
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Postby jcavan4125 on September 2nd, 2004, 5:59 pm

Everything sounds normal to me (including reflexes). With the length of time that you have been having symptoms and the normal exam and tests I think ALS is out of the question. I don't see a thing that points towards any other motor neuron disease either. Crazy as it sounds, normal means normal!
Joe... "That which does not kill us makes us stronger"! - Nietzsche
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Postby MikeN on September 7th, 2004, 6:20 am

The neurologist doesn't want to rule out anything, but she is leaning toward my symptoms being benign. Although she has experienced only one ALS patient (with slowly progressive symptoms) near my age, she said that my age (24) puts me at a much lower risk of ALS anyway. She didn't want to simply say it was benign and leave it at that...because something is causing the symptoms. She's going to have my urine tested for heavy metals and I'm going to play around with my diet. I'm already taking a daily multivitamin. I was taking a magnesium suppliment on top of that, but she told me that it could be too much. I feel better about the situation, but I wish I had a definite answer. Don't we all?
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Postby LeeNC on September 19th, 2004, 7:53 pm

Mike, how are you doing? Just wondering if we should mail you the Club membership card. :wink:

--LeeNC
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Postby MikeN on October 5th, 2004, 6:25 am

I've been feeling fairly well the last month or so. I still experience symptoms every day though. Yesterday was the worst I've felt in awhile. I have bilateral burning in both arms. It always begins in my elbows, then spreads elsewhere in my arms. This doesn't seem to be consistent with what people experience on this forum. Those symptoms are the first symptoms I had with this whole mess back in December 2003.
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Postby Bree on October 5th, 2004, 10:20 pm

Mike, Hi!

I have a close friend whose sister also has the Chiari malformation. She's in another state. I'll try to get her number tomorrow and see if she has any symptoms similar to yours. I'll post as soon as I find out anything.

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Postby Bree on October 5th, 2004, 10:22 pm

Mike,

I have a close friend whose sister also has the Chiari malformation. She lives in another state. I'll see if I can get her number tomorrow and find out if she has any symptoms similar to yours. I'll post as soon as I hear.


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Postby MikeN on October 6th, 2004, 12:59 pm

Thanks!
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Postby Bree on October 7th, 2004, 10:39 pm

Mike,

Just wanted you to know I haven't forgotten you. My friend's sister is on vacation. I'll post as soon as I can contact her.

Hope you're doing well.


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Postby MikeN on October 8th, 2004, 6:05 am

Bree wrote:Mike,

Just wanted you to know I haven't forgotten you. My friend's sister is on vacation. I'll post as soon as I can contact her.

Hope you're doing well.


Bree


Thanks Bree. It seems with a Chiari malformation, most people experience a wide variety of symptoms. I would be curious to know if your friend's sister is experiencing burning sensations in arms/hands and jerking in extremeties.
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