Status
Not open for further replies.

jiujitsu

Member
Joined
Feb 7, 2010
Messages
26
Reason
Learn about ALS
Country
US
State
FL
City
Boca Raton
I am a 33 year old male. In April of 2009 I had back to back stomache viruses. One week apart to be exact. Shortly after that I started to develope severe nocturnal myclonus. Then about 1 week later I started to twitch in left bicep, it lasted about three days and then dissapeared. The twitching quickly spread throughout my body in a matter of days. When I say it is everywhere I mean it. It waxes and wanes in severity and frequency, but seems to be there all the time to some degree. Now I have always had random muscle twitches since I was a kid, but never anything like this. I saw neuro about 6 weeks later and got the all clear. Had all the tests, I mean everything you can think of. Most important the MRI of brain and EMG/NCV came back perfect. Diagnosis was BFS.

In June I was having problems with tingling, tightness and electric shocks in back. Got mri of cervical and lumbar. Cervical showed 4 herniations with cervical stenosis and loss of lordosis (curvature of the cervical). Lumbar came back fine. Said the twitching was not because of this and again diagnosed with BFS.

About two weeks ago I had a follow up EMG/NCV this time by a Dr. who specializes in ALS. They found a bilateral root dysfunction in L5/S1 with chronic changes, but no current ongoing changes. Which surprises me because Lumbar MRI came back fine. Again they want to follow up, but say I have nothing to worry about at "this time".

So in conclusion I have twitched for about 10 months all over and have the one EMG finding. The nocturnal myclonus seemed to resolve for the most part on its own. I do not have any real weakness, but I do feel muscle fatigue sometimes off and on when previously I would not have. I have trained Jiu-jitsu/MMA for about 8 years and do teach and compete. Lately I have noticed that I get injured more easily and the injuries take a long time to heal. I have broke ankles, ribs, torn knees etc. and I am always back training within a week. Now I run for a little and have ankle pain when finished. Not the same ankle for all those who are thinking injury :).

I do have a history of health anxiety and am on medication for it. I do have some other sensory issues from time to time like feeling of spider webs on face and body when there is nothing there, burning sensations in legs, sensation of bugs crawling on legs when there is nothing there etc.

With the symptoms I have would you as a rational person put the ALS thing to bed? I have had 5 people, none of which are realted and don't live in the same area diagnosed with ALS in the past 3 years so my anxiety is very high.
 
With all due respect, a rational person would have dismissed the possibility of having ALS after receiving a diagnosis of BFS. A second diagnosis of BFS should have sealed the deal completely.
 
I am sorry if you think I am nut case. I seriously do not mean to bother anyone with real problems. I guess I am just very nervous because my best friend died recently of it and another good friend upon coming home from Iraq dies of it about 6 months ago as well. With the twitching and the nerve root disfunction at l5/s1 I am just freaked. Thank you verry much for replying.
 
This was the most recent EMG finding.

There was electonuerophysiological evidence for : bilateral lumbosacral root dysfuntion predominantly affecting L5, S1 with chronic changes (no onging active neurogenic changes) and it has not resulted in significant axon loss.

At present there was no evidence for underlying diffuse neurogenic degenerative process.

Have you ever heard of an emg change like this after 10 months of twitching eventually lead to a diagnosis?
 
I have not heard of such. I would take comfort in the BFS diagnosed although it is no cake-walk. If your twitching was due to lower motor neuron trouble, the EMG would have picked up on it. I'd be happy to trade diagnosis! (not that you're wanting too).

I think once a person is given a diagnosis of a motor neuron disease, they will do what they can (for a time) to suggest something less troublesome and more curable or treatable as an alternate.

At my next visit with the neurologist, I am going to suggest we think more along the lines of Peripheral Nerve Hyperexcitability, a form of BFS.
 
ty...if anyone has any other input on the emg I would like to hear it....god bless.

p.s. I know I should rely on Dr., but he is so vauge.
 
I can understand your worry and concern after losing two friends to the disease. It would certainly be very much on your mind.

As far as the EMG, I have not heard of it being used to diagnose spine problems as is done here. With ALS, they look for particular signs in the EMG indicating denervation (separation of the nerve endings from the muscle) and often axon damage and loss. It does not sound like they saw anything like this in your EMG. So I would take that as evidence pointing away from ALS.
 
from my understanding chronic changes means denervation/renervation...but only past chroic was noted...not current and they were able to pinpoint it to one disk so they are saying past injury at this point but want a follow up to see if anything else appears. I would like to assume that after 10 months of twitching it would be picked up in more then one place and would be active but my mind has me wondering. Thank you for taking the time to post. I know it is not easy for wveryone.
 
Once again with all due respect, you have a diagnosis -- BFS -- and you also appear to have some wear-and-tear/injury issues with the discs in your spine. There appears to be no reason for you to even consider ALS as a cause for your problems.

You should address your questions and concerns to your doctors. They can demonstrate how your symptoms support the BFS diagnosis and lead away from ALS.

Good luck.
 
ty very much and as always god bless
 
Just to put a fork into the discussion:

"No ongoing neurogenic changes" means that there is NO active denervation, which is an absolute must for an ALS diagnosis. You have reinnervation (and that could have occured 6 months ago or 6 years ago . . . and can and most likely will occur again given what you do physically) but reinnervation all by itself is typically nothing ominous.

Listen to everyone, most importantly, your neuro: You have your diagnosis, so please do your best to relax.
 
ty very much wright....I have read a lot of what you have written here and respect your input very much. It means a lot to me that you took the time to respond...god bless....what is ginastica natural? Antianxiety?
 
ty very much wright....I have read a lot of what you have written here and respect your input very much. It means a lot to me that you took the time to respond...god bless....what is ginastica natural? Antianxiety?

some yoga-like practice some BJJ practitioners used to do. It includes some breathing techniques that might help with anxiety problems...
It was popularized by Rickson....
I has an "athletic" part and a "breathing" part...

some clips
YouTube- ADD Filmes - ginastica natural(raphael romano)

YouTube- Rickson Gracie Ginastica/Yoga

some BJJ guys I know are into it...
 
Thanks....Was a huge fan of Rickson back in the 90's. Obviously he doesn't fight anymore so I don't really follow up on his stuff. I got my purple belt from Royler Gracie and my Brown from American Top Team owned by Ricardo Liborio who is a Carlson Gracie black belt, if you know who Rickson is you probably know everyone else I mentioned. This thing has really beat me down. I know the anxiety is worse then the symptoms for me. It is just really hard to get it out of my head with so many people around me having experienced it. And the constant twitching is a daily reminder. I guess I just may be having caregiver anxiety. Thanks again.
 
Status
Not open for further replies.
Back
Top